Here some suggested organisations that offer expert advice on SN.

Can we talk about MNSN, and the community/support/chat etc?

(1000 Posts)
silverfrog Tue 05-Mar-13 11:23:43

This thread may not be a good idea. I am severely sleep deprived (ds has decided yet again that sleep is for the weak, and I have had about 4 hours sleep since Sunday), and had the morning from hell getting dd2 off on a school trip - change of routine, needed ot wear tracksuit not uniform, different drop off/pick up - you all know the score. If you all think it is a bad idea, please feel free to report and have it deleted.

Anyway.

Can we have a thread where we try to sort out some of the perceived isues with MNSN?

I keep seeing, on the main boards, posts saying that MNSN is not suportive. That some faces don't fit. That it's not all it's cracked up to be.

Fine. I get that not everybody is the same, and may not want the same things form this board as me, or other posters. But it isn't really said here, and so we don't reallt get right of reply.

It's a bit like talking about us behind our backs.

I know there have ben disagreements and differences over the years. I have been part of some of them, but on the whole I thought we muddled through quite well - expcially given that we are all under a reasonable amount of stress most of the time, and that we all face fairly different challenges on a daily basis.

So - what do people want form MNSN? Is there anything we (as a community) can do to welcome people who feel left out? Anythign we can do to help posters who lurk rather than post?

I am rather hoping htis might be a moving forward discussion, rather than a re-hash of any he said/she said grievances. BUt as I said earlier, maybe this is entirely misguided. Sorry if it is.

lougle Tue 05-Mar-13 11:47:17

Hi silverfrog

I'm a bit at a loss, to be honest, to understand it myself. I know there have been 'kick-offs' over the years. I've been posting here on this section 4½ years, 7 years on MN as a whole.

My perception is that MNSN is a place where people can come and get what they need at the time. If they lurk, all well and good - they get the information from other threads, but don't get something specific to their situation. If they post directly, they get the information or support they need.

Personally, I get far more out of helping other people with snippets of information or resources, than having people answering my threads, but that's probably because DD1 is fairly stable right now, at a fab school. I have been hugely grateful for the support I was shown when DD2's hideous time kicked off.

This thread may be a good thing, if people can post sincerely and as fairly as possible.

ouryve Tue 05-Mar-13 11:59:31

I'm with lougle, almost word for word.

Sometimes, when things kick off, I do end up thinking "how the hell did that happen"?

But then it's easy to see how it does happen, because of the fact that some people are constantily running into brick walls irl and so emotionally and psychologically worn down by their own situations and just plain frustrated that they do become extremely sensitive.

And for those people, it's probably no comfort that we can listen (or read) and nod and try to empathise, but can't offer any concrete advice guaranteed to make it all better.

grinnbareit Tue 05-Mar-13 12:05:27

Hi silver, I have used MNSN for 2 years now (I have name changed because I felt I had been outed in RL) to begin with I felt understood, like I could say what was on my mind, that nobody would judge like in RL, somewhere that I could find answers or guidance when I had hit a brick wall, like I had found somewhere where I belonged with like minded people.

But over the past few months I have seen a change, it seems that anybody who appears with a new name is instantly a troll. If someone states something which, in there mind, gives them peace and makes them feel like more than a complete loser both towards themselves and their Dc they are instantly shot down with a sarcastic remark which then takes the poster back to square one.

I would very much like to see the old MNSN back, I thought it was such a wonderful place, and in a sad way I couldn't wait to come on here to help me find some kind of escapism from RL.

TheNebulousBoojum Tue 05-Mar-13 12:08:02

'But then it's easy to see how it does happen, because of the fact that some people are constantily running into brick walls irl and so emotionally and psychologically worn down by their own situations and just plain frustrated that they do become extremely sensitive.'

^ ^ ^
This.
When RL is very hard for a long time, and you are getting very little support, sometimes it changes how you see everything you encounter, so that small disagreements over an approach or a response can hurt so much more than if you are reading when happy and positive.
I think MNSN is a supportive place, and I've been here for years under one name or another, partly because people contribute when they have something constructive or useful to offer. You don't have to wade through piles of sickly marshmallow to find the core, if people don't know how to help in a practical sense they don't waffle.
But if someone is feeling isolated, they may perceive it as being ignored, which isn't what is actually happening.

lougle Tue 05-Mar-13 12:18:07

"But over the past few months I have seen a change, it seems that anybody who appears with a new name is instantly a troll. If someone states something which, in there mind, gives them peace and makes them feel like more than a complete loser both towards themselves and their Dc they are instantly shot down with a sarcastic remark which then takes the poster back to square one."

Grinnbearit sorry you feel that way. I think it is fair to say that we have had our share of trolls. We've also had posters who have found that professionals involved in their case have used their posts on here against them. Perhaps that makes them wary.

I think I am guilty of feeling that this should be a 'community' when for other people it is simply a resource they can use when they need it. I find that a sad thing, but some people just don't have the energy to help other people, I guess.

MsCellophane Tue 05-Mar-13 12:18:56

As a reader and not a contributor I would say it is just the nature of belonging to the SN club, that just because we all have a family member who has any SN, it doesn't mean we are similar people

Being a lot further into the SN world (as my children are adults) I would say that acceptance of your lot takes some people a much longer time to reach. And our world is a naturally isolating one. Some reach out to find others in similar situations and learn from them, others stay isolated and never come to terms with their life with a child with SN and all that entails.

I will say though, that sometimes on here there seems to be a divide between physical and intellectual disabilities and some people do come across as being bitter. Which is acceptable but can rub people up the wrong way. I have also seen competitive posters - my child is worse than yours type thing

I belong to another community where level of disability or presentation of disability never comes into discussion - we all have a child with additional needs and all deal with similar issues and we always celebrate EVERY inchstone a child makes.

MNSN has many, many people and it will never please everyone - some people can never see joy in their lives and never will. There will also be people that don't fit the style of MN. I'm not sure anything can be done. It is a good resource though

OhYeaBaby Tue 05-Mar-13 12:22:37

I'm guilty of that Lougle, when things are going well I tend to drift away from the board, and when DS 'flares up' I tend to come back - but sometimes just as a lurker. I guess it doesn't help build the sense of a community if I do that but other stuff seems to distract me when things are going comparatively well, I'm afraid.
I am also guilty of fairly random name changes so probably seem like a new poster, but I have been around since about 2006 - but in fits and starts.

lougle Tue 05-Mar-13 12:30:01

OhYeaBaby - that doesn't mean you are wrong, though smile it means that MNSN is working for you. It's here when you need it. I lurk on lots of the sections, where actually I have no connection at all, but find the reading interesting.

silverfrog Tue 05-Mar-13 12:30:04

thank you.

I have just checked when I started posting here - it was over 7 years ago, and I had lurked for a good while by then shock. it was different then, but then virtually every chatboard on the internet was different then - changes happen over time, always.

I don't post as much as I used to these days - dd1 too is stable and progressing well. I have posted with you about our dd2's, lougle, and like you have been well suppported.

ouryve -I completely agree. I wonder whether a 'support indicator' (sort of like a facebook 'like' button, but more a manly-MNSN-hug-and-pat-on-the-back button would be any good? This section does work quite differently from other sections, in that we do tend to 'know' a lot more about each other than main board posters (as a community, I mean, not any particular friendship/group), and so a button like that in this section might work? It could be for a 'blimey, I don't know what to say, but you are not alone' situation. maybe?

grin - I can't keep up with the name changes. <old gimmer> I find it quite hard to support sometimes, if I don't 'recognise' a poster - ie if I know a poster is not new, and yet I don't know 'who' they are - it feels hard to guage what support to give/how to give it. I hate being in a grandmother-sucking-eggs situation, and so I maybe do shy away from posting on new-name threads.

Nebulous - agree. I have posted threads before, in total despair, which have not been answered as well as I would have liked. and have wandered off muttering to myself that now, really nobody cares, not even the internet sprites. it does feel horrid. and then, when I come out the other side of that particular low-spot, I realise that actually, maybe other poster were also having ahard time. that not many threads at all were answered at that point, not jsut my thread. and so on. but it is easy to feel isolated, especially when it is a regualr feature of many of our Rlives.

For me, I find that MNSN is not as innovative as it used ot be. It can be hard ot post about a new intervention/diet advise/vitamin regime without a lot of disclaimers and rigorous 'but where is the proof?' posts. that's not better, or worse, just different. 7 years ago, there were a lot of threads on what was new and interesting relating in particular to dietary interventions. I find most of my info on that elsewhere now, as it doesn't feel right to discuss it here.

silverfrog Tue 05-Mar-13 12:30:38

oh, x-posts with lots of posters and now it look like I'm ignoring! will have another read in a sec - ds needs me.

zzzzz Tue 05-Mar-13 12:45:58

I find the site very helpful, and empowering. I don't have any issues with how it is, nor do I think "it was better in the old days". I do sometimes find disagreements on line upsetting, but I think that's normal in any relationship.

I don like sn top trumps, or "I don't feel welcomed here" talk, but I get so much more out of it that really that stuff is a small price to pay.

TheNebulousBoojum Tue 05-Mar-13 12:49:07

I do sometimes wonder if there is any point in my posting here, DS is adult now, and HF Aspie. Our lives have had some challenges in them, but nothing like what the majority on MNSN have to put up with. It's one of the reasons that Vicarinatutu and I became friends before we came here, our children had similar issues and were similar in age.
I feel a bit of a fraud on here sometimes.

silverfrog Tue 05-Mar-13 12:57:11

NEbulous - don't feel a fraud. You have a lot of experience, and some really good insights <don't want to be patronising>

MsCellophane - yes, we can't please eveybody, all of the time. But I don't like it when some people are feelign very obviously left out, and wondered whether there was anything that could be done to help with that.

I think sometimes it can feel hard when you post and don't get as many responses as you might think you would.

I think there are lots of people who 'know' each other here and naturally they get more responses than others. But when you are one of the 'others' it can be quite hard.

I read a lot and do try and offer support when I can, but I don't think I've felt particularly supported. Not unsupported, but not supported. does that make sense?

I have found this on Mumsnet as a whole though.

Inevitably people who are well known and come across well with the written word get support and interest from others. Maybe that's it. Interest. I don't feel people are terribly interested in me.

But then I don't think I write very well and I think this is part of it.

lougle Tue 05-Mar-13 13:12:55

TheNebulousBoojum that's really interesting, because one of the weaknesses, I feel, of this board is that people post when their child is just being 'flagged', post about the struggles of recognition/provision, etc., then there is a big black hole where the future lies.

I (and I know others) am always wondering what the future holds and actually having posters who can say 'DS was like this at 4 also, but now, at 16/17/18 it really isn't an issue and this is how we got there.' would be so encouraging smile

With DD1 I am torn between moments when I think 'ahh she's not all that affected really, what's she even doing in Special School', then the crushing realisation that actually, no, normal 7 year olds are not like this...

With DD2 I feel like I'm at the top of a roller coaster ride, knowing that the descent will come, but too far up to do anything about it.

I agree about the 'competitive SN' angle, too...it's hard which ever way you slice it.

TheNebulousBoojum Tue 05-Mar-13 13:13:06

I think one of the things that Vic and I wanted to be able to say is that sometimes there is light at the end of the endless tunnel, and it isn't always an oncoming train.
But that can come across as smug or know-it-all if someone isn't at that stage and never thinks they will be.
I've read a lot of your posts over the years silverfrog, they weren't of direct help to me and DS, but the areas you discussed were eye-opening and fascinating.
I enjoyed IndigoBell's posts for similar reasons.
It's hard enough to be a parent of a child with additional needs without biting chunks off other parents, and I've never felt unwelcome or irrelevant here.

TheNebulousBoojum Tue 05-Mar-13 13:16:29

Ds was late dx and highly explosive. People who knew how to deal with children on the spectrum found their assumptions smashed to smithereens along with many other items. smile
But ten years later, you'd never think it.

inappropriatelyemployed Tue 05-Mar-13 13:18:18

This board has been a life saver for me and I have welcomed the help and support I have received. I really don't know what I'd do without you guys. grin

It's just all those daily little problems that arise when you support a child with SEN that no one else understands. The time and care posters take to explain things and advise astounds me.

I would say two things:

1. People do go through very stressful times so we can all take offence/give offence without meaning too. I don't see anyone deliberately trying to hurt anyone else

2. There have been a few threads over the last few months from a small group of the same posters which have ended up being deleted by MNHQ. These posters have an agenda but will say they are being treated badly or not welcomed into the MNSN community as new posters. I have also seen posts from posters who are clearly SEN professionals. This, and the experience of some posters with being stalked on these boards, does lead to some suspicion and questioning of those new posters. But I have only ever seen this with those who appear to have an agenda or who are aggressively promoting views. This might not be right but I understand why it happens and I have only seen questioning not rudeness.

I have never seen new posters treated abruptly in any other circumstances.

inappropriatelyemployed Tue 05-Mar-13 13:21:32

I would add that I would like to post more and often see threads where I could add thoughts but I barely have time to eat at the moment (save for chocolate grin) and I am sure that is the same for others.

I suppose with limited time, those who 'know' of each other look out for each other as we follow the stories of each other's lives. But I don't think it's meant to be cliquey.

This has made me think more about responding to more threads!!!

grinnbareit Tue 05-Mar-13 13:25:16

It doesn't bother me at all if I am ignored, at the end of the day if nobody has anything constructive to say I would rather this grin. I will always think to myself ok there's a lack of trust there (the world doesn't revolve around me, having an off day etc etc) but maybe after a few posts I will gain it, but with some I don't think I ever will, can't say I will lose sleep over it though.

Silverfrog did you name change from Dolfrog or something similar?? if so you helped me mannnnnyyy moons ago...TAPS-3......thank you smile

I see that it can be a PITA when someone name changes, and not knowing the background of the Dc, or difficulties can make it hard but in my defense if I was to go filling in what wasn't known my handful of name changes would be completely pointless, thanks to my wonderful stalkers. In some ways for me my name changes have also been different chapters (for want of better words) one name was the angry with everything (school) me, another the useless me, another was the realizing me. This one is the I finally get it I have Aspergers too me, and hopefully I will stay with this name to stop causing confusion.

TICKLETUMBLE Tue 05-Mar-13 13:42:26

I am relatively new here, have posted a few time asking for advice, and a few times just downhearted about things writing to get them off my chest, and have generally had some kind of of response that was supportive, understanding and/or practically helpful to the specific situation.

I have been welcomed, and seeothers being welcomed too.

Thank you all for being here and and for being so open to share experience, being honest about how things are (good or bad), what you tried, what worked and what didn't, and giving positive vibes for the future.

I dont know what it was like years ago, maybe it has changed along with the people that use it, but for me this forum has been amazing in providing information , anecdotes, lightening the mood, sharing successes, and a general feeling that you have your hand being held when you need it.

dietstartstmoz Tue 05-Mar-13 13:48:54

I am probably more of a lurker than a regular poster, although I do use the SN boards often. I have missed lots of the recent threads where there has been criticism of the MNSN boards, if I had seen them I would have jumped in. DS2 has ASD, and these boards and posters have been a lifeline to me during the past 2.5 yrs since issues were first raised. I dont think we would be getting half the support we do get if it hadnt been for posters on SN encouraging me to apply for a statement etc. I have never had anything but support from the MNSN boards, so sorry I dont know how posters could be made more welcome. My experience has always been good and welcoming, and I have always had positive support, for which I am very grateful.

hazeyjane Tue 05-Mar-13 13:55:29

I have been posting here for the last 2 years, and I am often surprised when I see posters taking about not being welcome on the board, or having a bad experience here, because I have never seen this, and for me at least, it has been one of the most important places for me over the last couple of years.

But I can understand that life can be very isolating and relentless, and if you feel you don't 'fit' it would be pretty crushing.

I have noticed that there is often a tendency to see more threads about children with ASD, and so that can sometimes influence people's responses. But that doesn't bother me, because I think that a lot of us have shared experiences, whether you are at the beginning of the journey, have been here for years, we still all come up against that same feeling of having to be our children's advocate and feeling like square pegs in round holes.

There are 2 ways that mnsn has been so good for me, one of them is advice, wrt to the practicalities of dla, who to ask for advice, statementing etc. The other is friendship, I have found people on here who understand in a way that very few in rl can, and that has been an absolute saviour for me.

I wonder whether it would be good to have a general chat sort of thread stickies at the top of mnsn? There have also been a few ongoing threads - Tinsley house, Chromosomal Testing and one I started about looking for a diagnosis, with an undiagnosed condition. I think they often get lost in Active Conversations, and I think it would be great if they were stickied at the top or in their own, ongoing support section.

frizzcat Tue 05-Mar-13 14:02:35

MNSN has been a lifesaver for me. I'm a lurker and sometimes poster, actually I'm probably more a stalker I'm on here every day numerous times. I post when I can sometimes just to honk tbh, because I just want people to know I'm here.

In terms of the board being unsupportive, that hasn't been the case for me personally. However, having watched some arguments kick off I'm really careful about how I post, especially when responding to threads. I tie myself in knots trying to think if someone will or could be insulted by what I say, which ends in a non post or i completely lose track of what Im trying to say.
As our children are vulnerable so are we and sometimes that vulnerability makes us sensitive, and sometimes I think posts are sent in haste and upset and then it rolls from there. Do I think that makes it unwelcoming or unsupportive - I think those threads do, but they are the minority and even those threads have something to offer.

There are some prominent posters here but they deserve their place tbh - they post on others threads with advice constantly, they update with articles etc etc - and if any of us post a thread (especially in the dark days of diagnosis) and someone comes back with hope, advice and hand holding, you remember them and you try to return the favour - which can make things seem cliquey - but I don't think that's intentional I just think people gravitate toward people who they know

silverfrog Tue 05-Mar-13 14:03:44

grin - did you just ask if I am Dolfrog <gasp> how very dare you! grin

I think most of my more, ahem, enraged spirited posts over the years have been when in conversation with Dolfrog, tbh.

I do understand why people namechange. It's jsut I am hopeless with keeping up with it - and especially if other posters have cottoned on, it can mean I think 'oh well, they're getting help' and move on.

PrinceRogers - you came across well in your post. I am sorry if you haven't been answered sometimes. I think we have all been guilty, at some point, of clicking on a thread, reading, thinking we have nothing to add/can't help, and then clicking away.

hazey - it does seem very ASD heavy at times, I agree. I don't know why we don't get as many 'other' posters here. I can see why chat threads can be a good idea, but I am wary of moving useful, helpful discussion away from the board - chat threads can be time consuming ot keep up with, and useful info can easily be lost that way <selfish>

thanks to everyone for posting - this could have gone badly wrong, but I hope it has been at least a little useful.

frizzcat Tue 05-Mar-13 14:04:29

Oh and NEB - I want to hear about life in the future..... Light at the end of the tunnel is most welcome

troutsprout Tue 05-Mar-13 14:11:36

If rather the board wasn't seen as a 'thing' that had to be a certain way or fixed as a certain thing. To me the board is just everyone who posts. Its very different to how it was 10 years ago. Thats cool... things move on.

Once it starts to be about ' ownership it becomes a little weirdy imo and people stop making adjustments for difference.

Think people just need to chill a bit tbh

wot troutspout said

silverfrog Tue 05-Mar-13 14:17:09

I don't think anyone is trying to fix the board a certain way, or take 'ownership'

A few posters here have said it used to be different, but that things change, and c'est la vie. Fine, all well and good.

There are other posters who are not feelign so included, and not feeling comfortable. since the board is generally about support and helping those who are struggling for whatever reason, it might be nice to see if we could work out why some people are feeling excluded.

inappropriatelyemployed Tue 05-Mar-13 14:22:42

It would be nice and maybe we can help them with that but maybe we can't.

There are a lot of overstretched people here doing their best to live the semblance of a normal life.

If people post respectively, and try to do their best to offer help, I'm not sure what else we can or should do.

lougle Tue 05-Mar-13 14:28:53

Ownership? I didn't think that's what we were discussing. In fact, I thought Silverfrog's OP was entirely the opposite - how do we address the feelings of posters who may be expressing a sense of discomfort about posting here because they feel that they do not 'belong'.

The board was ASD heavy for a while. I felt at that time, that posters only wanted to hear from people with direct (familial) exp of ASD. Either thread titles and OPs have shifted, or I am in a better place, because I don't read them as being so 'exclusive' now. I've either got to a better place with DD1 having an undefined SN or I've got a bit tougher and think 'stuff that I'm posting anyway.' Who knows?

It's interesting that there has been a massive rise in PDA threads - it's the new 'thing' to be aware of.

There is never going to be a surge of 'squiffy brain with genetic element but no known reason or identified condition', I think grin

frizzcat Tue 05-Mar-13 14:35:09

grin "squiffy brain"

TICKLETUMBLE Tue 05-Mar-13 14:44:59

'squiffy brain with genetic element but no known reason or identified condition'

This is exactly what makes this place necessary - things can be hard, and the black clouds never seem to pass...and then someone posts something that describes exactly how it is and makes you giggle at the same time.

thanks!
smile

I don't think it is possible tbh. I thought a poster (with a name I didn't recognise - so hey, was responding to a perceived 'new' poster with support) had come up with an excellent idea, so I said that, and followed it with 'cheers' and their response was that I had dampened their spirit 'as always'.

I don't have a clue where to go from there tbh confused.

TheNebulousBoojum Tue 05-Mar-13 14:57:11

grin I think most of us would have been confused by that response!
Some people have a lot of baggage that neither they or us can cope with. All we can do is make an attempt to be supportive, and not get distressed if that is not what they were looking for. We don't really know each other, so we are bound to put a foot wrong without knowing why on occasion.

eggandcress Tue 05-Mar-13 14:58:13

I am not a big poster maybe because I am really slow at typing and the moment is gone by the time I post!

I find this board really helpful with lots of help and advice which can be gleaned just by reading people's threads.

I am a bit anxious about posting too much as I feel I am very identifiable in real life. I have two dc with disabilities including a rare distinctive condition.
Maybe I am just too self conscious!

Anyway recently I put a thread up about trying to get respite care for ds and Bigbluebus wrote a fantastic response and I followed her advice and now we have respite. I am so grateful as just one nugget of information can really help sometimes.

I feel everyone seems very kindly on here and I am staggered when people take the time to write a well thought out helpful reply.

What is the betting this thread has moved on now as I have been so slow...
grin for MNSN

frizzcat Tue 05-Mar-13 14:59:07

???? Starlight always found you incredibly helpful and quite upbeat bit miffed at that

Maryz Tue 05-Mar-13 15:01:42

I think the SN section is very supportive most of the time. I don't use it so much these days as ds is much older (and technically has moved from SN to druggie hmm) so the problems and solutions have changed for me) - I post mostly in teenagers now.

I think there are two problems. The first is newbies who have just heard that their child has a diagnosis and are really traumatised. I think those of us who are further along the road should accept that trauma, the denial, the "why me?" resentment, the "why can't my child be normal" without immediately jumping to defensive mode and saying "your child is normal; are you implying there is something wrong with mine" iyswim. So a bit more understanding of newbies would be good - and if those posts piss you off, hide them.

The second problem is the "degree" of disability experienced by different parents. For me, school problems were the worst, with some behavioural issues at home. Compared to some, my life was easy and wasn't affected much, at the time, by SN. But to me it was majorly affected.

Again, I think if people think "oh, that isn't really much of a problem; lots of people have it much worse", then again, better to hide the thread.

Maryz Tue 05-Mar-13 15:05:33

I have also suggested that the SN board should be split up and instead of the present categories there should be SN - Support and SN - Discussion. And those who just want support can hide the Discussions (which are the ones that get nasty) until they feel strong enough to deal with them.

And then the tumbleweed topics (such as SN teens) should be in stickied threads at the top of the SN - Support section, so there could be an ongoing thread for example for parents of children with profound needs, parents of teens reaching 18 and theoretical independence hmm, that type of thing. So people with similar problems looking for similar help could find each other.

Interestingly, I first posted her eleven years ago when ds was diagnosed with AS.

There wasn't a single person on the board with a child with ASD shock.

The SN section has come a long way since then.

ouryve Tue 05-Mar-13 15:22:51

I think it's easy for it to end up ASD heavy, since about 1% of children are affected by ASD. Even then, I think we've ascertained (even by my own straw poll of 2 boys) that "kids with ASD" is a far from homogeneous group, anyhow.

And lougle iirc, isn't it your DD1 with her "squiffy brain" who, written about in the abstract, seems very similar to my DS2, with his ASD? If it is, they seem to have more in common than DS2 does with DS1!

Ineedmorepatience Tue 05-Mar-13 15:31:56

I have had great support from this board over the last 3 years and at times it has been my only support.

A few people have left during the time I have been around but generally that has been due fall out from other boards.

zzzzz Tue 05-Mar-13 15:39:33

I think it's impossible to work out "why some people don't feel included".

There are people in all walks of life who are less secure, and need reassurance that they are alright. I find most of the threads where it ends up with "you just don't want me here" that that has never been said and is refuted by multiple posters multiple times.

I'm actually beginning to hit a sort of compassion failure, which really shock me. I have very very many needy people in RL who need gentle and comprehensive care. If someone is really determined to feel left out on line there is only so much I can do. I try to withdraw now.

I don't see cliques on line though there are posters I am slightly in awe of.

I love the humour and the bluntness. I love that I can share what I think about sn, and ds, and professionals and you guys get it.

Sometimes I cry at the awful endless paper cuts of horror that is part of our lives.

I love to hear the triumphs big and small.

All my "knowledge" is parenting stuff, and the things I think in the dark of the night. I hav nothing else. I will never work outside the home. I will never be off duty, having people listen to me and occasionally find what I say useful is such an extraordinary unexpected pleasure. blush

inappropriatelyemployed Tue 05-Mar-13 15:43:58

ZZZZ. That is an amazing post - as ever.

Maryz Tue 05-Mar-13 15:44:16

I agree with that zzzz.

I have never seen anyone tell anyone else they are not wanted here.

I have seen people say "you don't want me", but that is different.

Walter4 Tue 05-Mar-13 15:51:41

I am a fairly resent poster, and must admit any issues must have gone right over my head! Having struggled to get my sons needs accepted and diagnosed ,I feel having somewhere that helps others see that is the usual process is very reassuring. I'm always on here! I use quotes from here to help me deal with professionals and stop them from intimidating me and also I must admit to having a need to talk to someone some how when things are tough without getting told he will grow out of it or that he will realise that's naughty soon.....diagnosis or not people with NT kids can't seem to get it.
So I am grateful to you all, absolutely no complaints! smile

coff33pot Tue 05-Mar-13 16:27:59

I love the board just as it is. The banter along with it. Not really been here that long so dont know what it was previously like but long enough to know that when I was at my lowest ebb and in denial there was someone here at silly oclock in the morning that took me seriously and directed me in the right direction without plain saying "for gods sake its obvious!" grin

I am forever grateful to the SN board for this and I wouldnt change it for the world.

And no I have never read someone stating that they are not welcome or wanted here.

I like the mix of people. Some say it like it is and some approach softly softly. Remembering all the time that none of us are professionals in the SN world other than parents who have learnt a lot along the way and stored it up for future use. I like the fact that there are differences of opinion and different angles of approach. There is something for everyone here I think.

signandsmile Tue 05-Mar-13 16:31:59

Iv'e been around for about 3 years and I have never felt excluded or marginalised... I don't do anything else internetty, IYSWIM, so I approached MNSN as I would a RL group of people, lurked a bit, till i felt comfy, posted a bit, if I felt I had something to say, got comfy with you, and then just chatted, helped when I could shared when I needed/wanted to. I have been helped enormously over the years...

Yes there have been some 'spats' and I have thought blimey I'm not gonna get into that conversation! but that's life, people feel strongly about stuff, (just like in RL again).

I am a bit worried now that (for the first time ever) I called someone a troll (but that was as rude as I got) and it was the horrid thread about being able to keep any 'thing' alive these days...

perhaps I am a bit odd, in that I kind of think of you all sort of down the pub with me, an open group anyone can join, but one that has existing conversations going on. We all budge up and make room on the seat for anyone to join us, and make them feel welcome, but if a group of people all arrive at the same time and suddenly started having a conversation about a certain topic that hadn't been discussed previously I would find it a bit odd, and it might feel a bit of a 'set up' (in my pub analogy).

Hope that made sense..

kyz1981 Tue 05-Mar-13 16:35:19

I am kind of a newbie to the SN world and I guess this board, but I have always found you guys great and I love the fact that I can get honest, straight forward advice.

I am still discovering how my DS is affected and still very much learning about his issues- this board has helped with so many areas of my life with DS, from being assertive with proffs and helping me gain perspective when getting caught up in the labels/terms used, It has also helped me see things from others points of view, stopped me getting stuck in a train of thought that is not helpful and given me a kick up the bum and take action sooner rather than later.

It's just sooo nice to have people that 'get it'.

It has also given me the confidence and conviction to stating what my son needs, and challenging the rubbish that tends to come out of people/LEA mouths.

I have gained so much insight and my family would not be as strong without my ability to vent, cry and sort out issues at hand without wearing down people in RL.

Crawling Tue 05-Mar-13 16:41:45

Im new and id just like to say in the short time ive been here ive felt supported included and valued.

Particularly had alot of help from Lougle, starlight and polter so a big thank you to the above posters any everyone else here who takes the time to help parents struggling.

People also seem to remember my story which doesnt happen on many other boards.

Dinkysmummy Tue 05-Mar-13 16:57:15

I am new too, and I have had nothing but support, advice and best wishes from everyone. I have not once felt excluded, unwanted, ect. I feel like I fit in because I have a kid with SN. Simples!

sickofsocalledexperts Tue 05-Mar-13 17:11:01

I saw a few threads a while back that I thought had a cliquey air, if I'm honest. I hadn't been on for a while, though like others have been posting for 8 years. Maryz made good points about giving newbies time to let their feelings out. It is easy for older hands like me to forget the shock and awe of initial diagnosis time. Things seem to be better now, pleased though that SF started this thread

EstherRancid Tue 05-Mar-13 17:17:05

ok, i'll stick my head up above the parapet, but please hear me out

i sometimes feel really reluctant to answer a thread or ask questions because often i read answers that mean nothing to me. I don't mean they have no interest, I mean I don't have a clue what is being suggested blush

being the parent of a child with SEN/SN is exhausting (yes, i know it gets to everyone, but this is MY say)

i don't think i've got the brain power to cope with all of the procedures and hoops we have to jump through, and then when i come on thread and the very 1st reply is eg 'apply for DLA/statement, don't do this, do that' it's baffling even more. _sometimes_, while that is the most obvious response to people who know, I find myself recoiling in fear.

that isn't to say i've not had some fantastic support when i've needed it, when i've been at some very low points, but i think it's easy to forget that even the thickest skins can have soft underbellies.

i know it's not up to other users to hold my hand or treat me with kid gloves etc, but i thought i'd throw my twopennorth in.

lougle Tue 05-Mar-13 17:19:02

It's all perspective, isn't it?

Someone new comes along, absolutely blind-sided by their recent awareness of their child being 'different.' Often, they have been approached by school who start talking about CAFs, SA, SA+, IEPs.....nobody stopping to draw breath.

To those people, the posters who say 'well CAF is....., SA is...., you need to do x...' are fonts of all knowledge.

To those people who are posting the advice, it is straightforward 'SEN ABC'.

For me, quoting passages from the SEN CoP is second nature. I know it inside out, I have it in PDF, I can just copy and paste.

Then, people come along who have more complicated issues with deeper back stories, who need more specific advice which is tricky when you don't know the details...

I can see how those posters may feel ignored, criticised and marginalised, because to be of any real use, you have to ask questions to get to the bottom of the issue, then there aren't any quick or easy answers.

lougle Tue 05-Mar-13 17:22:30

What an uncanny cross-post with EstherRancid.

I'm sorry that you've not had the advice you wanted, Esther. What advice did you want? Would you have preferred more answers that reflected on the experiences of being in that situation, rather than practical answers?

EstherRancid Tue 05-Mar-13 17:23:53

lougle not all posters want an answer that is of 'real use' though, sometimes just a friendly ear and a shared experience is enough

EstherRancid Tue 05-Mar-13 17:24:47

yet another uncanny x-post there grin

bochead Tue 05-Mar-13 17:24:50

I think we all sometimes have to remember that everyone has their moments of sheer genius and those "oops" shouldn't have said that. Especially as many of us may be posting when stress, sleep deprived or feeling a teeny bit battered ourselves.

Sometimes when in a dark place ourselves perhaps we post when we shouldn't. Hopefully we are all mindful enough about others potential experiences to cut each other a bit of slack occasionally when boo boos occur.

I take great note of the forum diplomats as I totally lack this skill myself, especially in written format. (have now trotted off to many a meeting with MNSNers advice on tact firmly tucked in my back pocket!) Sometimes it really is better for me to say nothing at all than risk upsetting someone who I feel may be feeling vulnerable. Or it may be I just haven't a clue what to suggest. It doesn't mean I don't care.

I witness enough of the NT Mums cliques at the school gate, & really don't think this forum has any of that thank goodness (Though a few people may share a special interest in one topic at times, those favoured topics too seem to vary often)

TheNebulousBoojum Tue 05-Mar-13 17:36:01

One of the many good things about asking questions here is that no one patronises you for not knowing though, there are no ' FFS' responses, even if some posters have responded to the same simplistic questions for years.
I love the way that someone can ask 'Is sensitivity to noise possibly linked?' or 'He doesn't like his food touching on the plate...' and suddenly there are a number of posters saying 'Yes, welcome. have you tried...' and it's all helpful and positive and not weird or 'You are pandering to him, you must BREAK HIM!'
There is a lot of space and tolerance for a wide range of questions and levels of need.
In years past, I kept hoping that the Feminist boards would take a leaf from our COP here, but sadly not. grin

alimac87 Tue 05-Mar-13 17:38:36

I have only posted a couple of times and people have been very supportive. Been lurking quite a lot latery - I talk about this stuff to some close friends but some things are easier to share with total strangers. Our issues are dyslexia rather than ASD so I feel a bit in the minority, especially as I really don't believe in specialist diets. It doesn't feel offputting, the only place I'm scared of is Am I Being Unreasonable. Although I will read if in need of an adrenaline boost. :-)

lougle Tue 05-Mar-13 17:41:24

I do think that if people want to simply offload, it would be useful if that was somehow communicated.

'Please help, I don't know what to do about x.', for example, will lead me posters to tell someone what to do about x.

'I'm frustrated about x, just need a moan.' might lead to poltergoose posters offering freshly made chocolate cake.

EstherRancid Tue 05-Mar-13 17:41:57

i'm talking about (now this is entirely hypothetical) coming on thread after a really shitty meeting with senco, and the 1st thing that's said is 'statement! or 'duty of care section xyz'

if you're vulnerable and feeling very tender, this is extremely scary

lougle Tue 05-Mar-13 17:48:17

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

EstherRancid Tue 05-Mar-13 17:50:43

that's unfair lougle, if it was similar i didn't mean it to be the same - of course there are similarities - this is the SN board, this is the sort of thing that is asked

moosemama Tue 05-Mar-13 17:51:17

I'm not sure what to say really.

I have been here for around 4 years now, I think. First as a lurker, then total newbie with a tonne of questions and gradually moving on from there to ... well, I don't really know what I am now. blush

I think it's the nature of an online forum to change, as posters come and go and things like the political and economic climate impact on our lives. I suppose I just see that as inevitable and not exclusive to this board.

I do think the board is still quite ASD heavy, but I am also aware that there are links to MNSN on various ASD related websites and the local ASD related charities in my area also recommend it, so maybe people are kind of funnelled (sp?) here through those kind of links. Also, if you google almost anything with the letters ASD in it, you will usually find a link to a MNSN thread fairly high in your search results, so, if you are actively searching for ASD related support, your search is highly likely to lead you here.

I go through phases with regard to my activities on the board. Sometimes I need support, sometimes things are going ok for us and I have the time and headspace to support others. Sometimes I have just had enough of everything and at those times, often read threads and even start drafting a response, only to feel I have nothing useful to add and not enough energy to come up with anything new or interesting. Finally, just like some other posters on here, I am dealing with my own health problems, as well as all the SN stuff and sometimes I am just not well enough to be of any use to anyone, so I disappear for a few days.

I have personally always found the board to be a welcoming, supportive place and I try to give back the support that I have received, within the parameters of my both my knowledge and my capabilities (dependent on current rl happenings and my health).

I am often confused when people get upset and indicate they feel marginalised and/or not wanted, but on those occasions, I usually assume I have missed something. I honestly believe that we are all here with the best of intentions and none of us wants anyone to feel unsupported or not wanted.

So, as usual, lots of word from me, but nothing new to add. blush

EstherRancid Tue 05-Mar-13 17:52:57

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

TheNebulousBoojum Tue 05-Mar-13 17:54:53

So do we need a special icon or something?
A flag that can be waved to let people know that although we might want advice and erudite ripostes to SENCOs and S&L and LEA at some point, at the moment what we want is a hug and chocolate and a rant.
I'm not waving for assistance and advice, I'm drowning?

EstherRancid Tue 05-Mar-13 17:55:42

maybe maryz's had it right, section the boards up?

TheNebulousBoojum Tue 05-Mar-13 17:58:16

I don't think you were being shouted down, Esther. Just that unless the OP is clear about what they want, what they will tend to get is advice based on years of fighting the system and posters wanting to offer practical help rather than tissues.
Hard to know what to do really.

TheNebulousBoojum Tue 05-Mar-13 18:00:35

One ASD site I used to frequent had a stickied thread just called AAARRRGGG!
Specifically for ranting and sympathy.

lougle Tue 05-Mar-13 18:02:38

I think on the whole, we do a bit of both, TNB. I think we all need to remember that we are all here because we want to be, too, though. It takes time and effort to respond meaningfully to posts on SN.

sickofsocalledexperts Tue 05-Mar-13 18:04:21

The problem with online chat rooms is that you can't convey tone with the written word, like you can with the spoken.

Writing tactfully is hard!

Look at these two sentences which say the same thing but in different words (I know I sound lecturey, but the written word was my career):

1. Look up section 9 of the Sencop and tell them you want a new IeP pronto

2. I found one section of the Sencop really useful, would it be an idea to read up on it and then use the wording to suggest a revision of the IeP?

It is the same thing, but with some cushioning tactful words. I know not easy when we are all posting in a rush

Also think the icon for "need sympathy, not advice" is good

Can I just say, - for the record, that I have been absolutely SLATED at times on SNMN.

Sometimes it was a misunderstanding.
Sometimes it was deserved.
Sometimes it was deserved on the basis of my post but not on the basis of my intentions.
Sometimes it was deserved on the basis of my post but not on the level of my fragility at the time.
Sometimes it just wasn't deserved.

Usually, when I get a slating, it is the regular posters that slate me (and I guess I consider myself a regular poster too), rather than the new ones. It's bloody horrible, especially when it is by someone that you really respect.

But, I don't think they shouldn't have said what they said, even if I still disagree, even it it really is not deserved. I have come on a considerable journey and if I'm honest, it is the slatings that have helped the most, given me practise for real life and challenged my arguments before it REALLY mattered.

That, for me, has been one of the strongest things about this board.

EstherRancid Tue 05-Mar-13 18:07:08

yes sick

i was trying to explain why and how I felt using the boards sometimes, and that illustrates it very well

moosemama Tue 05-Mar-13 18:08:48

I wonder if practical advice rather than a hug and some chocolate is offered because, unless you know the OP well, you are concerned about coming across as patronising.

TNB, I like the idea of a stickied AAARRGGG! thread. grin

I should have said in my other post as well, that I really like to read posts from people with older and adult dcs because it helps remind me that there is more to ds's SNs and our life than the here and now, it's a long road we have to travel and there will be both good and bad times ahead. Sometimes it feels like the current 'phase' is all there is, iyswim and I need to be reminded that I have to think about more than just the here and now.

Also, just because we're not there yet with our own dcs, doesn't necessarily mean that we won't be able to brainstorm some ideas/solutions or even perhaps offer advice based on other relevant life experiences. Not sure I explained that last bit very well, but I hope you know that it basically means that I feel we all have something to offer each other and appreciate the input of posters at whatever stage of life or the SN path they are on.

EstherRancid Tue 05-Mar-13 18:09:41

Star i've not witnessed that really, where regulars have rounded on you, but it's that behaviour that can be seen as cliquey too. they 'know' you and you have taken it on the chin, and learnt by it.
a newer poster could read that a run for the hills

i'm not saying it is, just trying to play devils advocate and generate discussion

TheNebulousBoojum Tue 05-Mar-13 18:11:23
EstherRancid Tue 05-Mar-13 18:12:21

i wouldn't call it patronising, not by a long chalk

how many people post here on SN because they can't talk about the issues in RL?

this section is far more honest than the rest of MN - there is no point in changing minor details for fear of outing yourself for a start, that would make asking for advice pointless

I've been thinking about this thread all day, weirdly!
I am a long term ish mumsnetter, several name changes and come on to the sn board every so often. I think that there are some who are a kind of loose 'group' (ie we recognise each other's names, and prob a bit of back story) and that can be quite daunting in itself for a new poster.
In terms of myself, i am sometimes thrilled the board exists, and at other times it feels quite exclusive. There are some threads you just can't join, i feel, as there is a certain direction and if you go against it, you are made to feel a bit wrong.
Another thing, weirdly enough on this thread (ironic) is the comment that some posters are clearly sen professionals - does that mean we can't also be treated as parents of sen kids?
I don't know. Maybe it's just like real life!

I don't always take it on the chin. Sometimes I sulk. Sometimes I disappear for a while. Sometimes I stay and row for a while before disappearing and sulking. It really depends.

moosemama Tue 05-Mar-13 18:19:07

Well it wouldn't be intended as patronising, but stepping back a little, I thought about how I might feel if I posted on a new forum explaining the situation with one of my dcs and the first response I got was 'have some wine'. The answer is, I'm not sure. It would depend on my mood and my reason for posting and my reason might not always be immediately clear to others, depending on how well worded my OP was. As sign said, words on a page can be easily misinterpreted because there is no tone or emphasis to go on.

So, because of this I might err on the side of caution when someone first posts and offer some practical advice first. Whereas if it was someone I've already had a few conversations with, I might offer the wine /cake/chocolate because I would be better able to judge whether or not that was what they needed.

For that reason, I think the idea of an AAARRRGGG! thread is a really good one.

TheNebulousBoojum Tue 05-Mar-13 18:19:22

I'm not an SEN professional, but I am a teacher. I tend to post about how to phrase arguments so that the school has no wiggle room when it comes to meeting needs, or to suggest ways that MS education can be made accessible when the child has a specific issue that the teacher isn't accommodating.
So nobbling from the inside rather than posting from a position of authority. Know your enemy and all that.

lougle Tue 05-Mar-13 18:25:57

"1. Look up section 9 of the Sencop and tell them you want a new IeP pronto

2. I found one section of the Sencop really useful, would it be an idea to read up on it and then use the wording to suggest a revision of the IeP?"

I rarely see people quoting the SEN CoP without explanation. I would never suggest someone just reads up a section, because it has key words.

lougle Tue 05-Mar-13 18:28:13

Sorry, sickof, that was a stupid response. I know it was just an example.

I do feel that there are a lot of posters who put a lot of time and effort into helping others and are being criticised for not spending even more time and effort making it completely fluffy bunny, though.

EstherRancid Tue 05-Mar-13 18:32:01

lougle you seem to be arguing specifics when this is meant to be a general discussion?

it's nigh-on impossible to use a totally hypothetical question to illustrate a point because the examples have to emulate the reality

what someone used as an example doesn't need to be thrashed out, can we not talk about the principle of it all?

EstherRancid Tue 05-Mar-13 18:33:26

if that was aimed at me lougle believe me, i ain't all about the fluffy bunnies grin

no-one is criticising anything, are they?

sickofsocalledexperts Tue 05-Mar-13 18:33:51

Lougle - it was probably a bad example but wot you don't see is both kids screaming "muUuuuum" so I am literally racing to post and then drive dd to guitar lesson. And I don't get offended by robust plain speaking as I am very very old and very thick-skinned, but newbies are needing more tact

lougle Tue 05-Mar-13 18:36:14

Yes, certainly, Esther.

I feel as an individual, that posters who give their time and effort when posting informative and factual replies to threads, are being criticised for not spending yet more time and effort in making sure the tone of the information is also conveyed with an appropriate level of wine/tea/tissues/sympathy.

I think it would be useful if posters feel that they would like to avoid such advice, that they would be able to indicate it.

I agree that sometimes posters just want to rant and don't actually feel that they are in a position to take the steps that may resolve their present difficulty.

lougle Tue 05-Mar-13 18:38:32

I've got to run - Governor's meeting at DD1's school. I'll catch up when I get back.

TheNebulousBoojum Tue 05-Mar-13 18:39:37

It seems as if you are saying that a poster may come here looking for tea and sympathy and be alarmed by posters who offer useful advice instead, Esther.
But there are also posters who come here at the end of their tether and completely lost in the mists with no idea of what direction to take.
So someone with a light and a map is more use to them than a cuddle.
This board is pretty good at offering both, but telepathy is tricky at the best of times, let alone when people are communicating through writing. So if a poster feels overwhelmed, they need to say so, and the focus of support will change.
But for many, MNSN has enabled them to accessthe experiences and skills of others that has made their path clearer.

'Star i've not witnessed that really, where regulars have rounded on you, but it's that behaviour that can be seen as cliquey too.'

Not sure I understand your point. Is it that something hasn't happened unless you see it?

And, how exactly would you like me to be rounded on that you'd find acceptable?

People usually come here when they have had enough of caring carrots and are looking for someone to DO something, ime.

Maryz Tue 05-Mar-13 18:44:53

I think the same applies on here as in real life though, to a certain extent.

When my dealings with ds were at their very worst, I went for counselling. One of the first pieces of advice I got was to find a sympathetic friend and meet once a week for coffee. During that time I had half an hour to moan about ds, and her job was to listen. Not to tell me what to do, not to problem solve, not to simplify things or offer to help. But just to let me vent and ramble and grieve I suppose for the life I felt I should have had sad.

I have a friend who is wonderful at that, and really helped. Where dh and my mum reacted to my moaning by trying to either stop me complaining (because they couldn't cope) or by trying to give me an answer - which also wasn't possible as the problems were insoluble.

So what (I think) Esther is saying (and correct me if I'm wrong), sometimes the same post wants a different response.

For example, a newbie could post a thread "I've just come home from the most awful meeting and I don't know what to do" - in this case they have just got a diagnosis, they need to fill in forms and find out about practical things to do to help, they have to talk to the school, find out what CAHMS is etc etc. Useful practical information is what is needed.

But someone who has been here a while and battling with those things wants a different reply - maybe "oh, dear, that's terrible, is there anything that could help, have a hug and a wine".

Do you see?

The second response is no use to the first poster, the first response is just what the second poster doesn't need.

But in each case, the replies are intended to be helpful.

So going back to my "support" and "discussion" boards - that might sort that out. Possibly.

I feel like a bit of a fraud as I hardly post here these days, so tell me to fuck off if I'm treading on toes. I just happened across this thread.

Personally, I think you are all fantastic thanks

Maryz Tue 05-Mar-13 18:45:47

And in the meantime, TheNebulousBoojum put my entire monologue into about three lines. Sorry blush

inappropriatelyemployed Tue 05-Mar-13 18:48:41

Esther I sympathise if you wanted a cyber hug but got a legal lesson.

But people post from the very best of intentions and they spend alot of time trying to help so it is best to make that clear.

Also, sometimes people are right even though it might not be what you want to hear.

I posted on here about 5 years ago when my son left his first primary school. The head had suggested he had 'sensory issues'. I was appalled and annoyed. People on the education board pointed me this way and I thought they were crazy. I din't like what I was being told. But everything people have suggested has proved to be right.

In his second school ,I tried to work with school even though they obviously didn't want to support my son. People here suggested I go for a statement. Nonsense I thought - how confrontational. They were right.

Even with a statement, the issues continued. Posters here said, this school doesn't care and you can't make them. Nonsense I thought so I wasted a year of my life before moving my son again.

Now I am not saying this is the same as your situation and I haven't read your posts but sometimes people are right even though you might not see it because they have seen it time and time again.

That might be worth thinking about.

TheNebulousBoojum Tue 05-Mar-13 18:52:29

I missed that latest terminology.
Like, OMG am I a Caring Carrot? shock

Blimey Inappropriately I never saw your 'story' like that, but I guess you're right.

Equally, people here have told me in quite forthright terms what I needed to do which I promptly ignored. Many times.

In fact I didn't even know half of the things they advised were possible. But they were right.

I have problems still. The meeting we just had was so promising but I've seen the output today which was a very disappointing watered-down version of what we'd agreed but my god, compared to the problems I have had it isn't a bit thing (Doesn't stop the tears or draining of wine, and impatience with the kids but all in the life of a SN parent eh?)

HotheadPaisan Tue 05-Mar-13 18:56:34

I still want an SN Chat section that disappears after x days, I do not want stuff about my DC living forever.

I have a list of useful info I have which I post and I chat to new people all the time. I understand the archive thing but most people want to chat now and the archives don't trump my DC's privacy or my preferences.

I like it here, it's busy now, 'active' convos are often off the page. It can be a bit 'I agree with x' sometimes, but if you do, you do. It just might help sometimes to add more than that.

Not keen on the honking but I am a curmudgeon in that respect and would rather someone engaged with 'what are you thinking?', than honks, but no-one's a mindreader.

Sometimes I think we could do a bit more of 'I know you want to discuss x, but I'm talking about y', that might help people feel listened too.

Overall I love it though, I read it every day. Having a total nightmate atm but I keep it to Twitter so I can delete it.

First person to honk gets hidden grin

EstherRancid Tue 05-Mar-13 18:57:07

i missed a couple of words out Star 'sort' and 'of' - apols

i don't want anyone rounded on! shock - i've personally done something for you in the past, under a different NN

maryz you have it taped.

now i was responding to the OP, where silver was asking if we could talk about some of the perceived issues wrt to the SN section

i love this section, the information is top quality, people are amazing, but we are all different, as different as our DCs, and if anyone feels criticised by my clumsy wording, then i'm sorry - that was never my intention.

good grief, would i have laid myself open for such a flaming if it were confused

Maryz Tue 05-Mar-13 18:58:43

I too remember the sense of denial [sigh]

I'm in Ireland where I now spend ages telling people what they can get to help their children - and most of these things simply weren't available when ds was diagnosed. His head teacher had never heard of Asperger's when he was diagnosed, there was no such thing as a classroom assistant or one to one teaching. It was a nightmare.

TheNebulousBoojum Tue 05-Mar-13 18:59:59

And before that becomes a theme in its own right, everyone has the right to honk and to ask for honks, and others have the right to hide honking threads.grin
In the same way that many of us detest the Holland text and a few find it a sweet and fluffy comfort.

Galena Tue 05-Mar-13 19:00:39

I'm another who doesn't post a huge amount but I pop in and out when I need advice - and when I do pop in I try to offer help and support if I can.

HOWEVER, I do find it difficult at times because the board is very ASD heavy, and I have absolutely no experience with ASD. DD has cerebral palsy and has wobbly legs... Not much help when people are asking about ABA or something similar...

I have found some excellent advice out there when I've needed it, although I've also found some of the posters offering that excellent advice offering it in a very blunt way which has made me panic a bit... I guess it's time constraints, etc. But being told 'Don't do x, y or z because the LA is going to do this which means you won't get a statement - go to tribunal instead' was difficult when in fact, I did do x, y and z as requested by the LA, it all worked out and we got a bloody brilliant statement at the end of it. Maybe we were lucky, but possibly if it had been more phrased as 'A number of people have been told something similar by their LA and have found that doing this is a better way to approach it' I might not have had sleepless nights panicking about what to do.

However, when I have come on wanting to rant, people have listened and sympathised. When I have come on wanting advice, people have offered advice. When I have come on and offered advice or support, people seem grateful to me.

I agree with the PP who said something along the lines of 'just because we all have children with SN, doesn't mean we are all similar.' I had a lot of 'friends' on my FB who had premature babies around the same time as DD was born. We've recently realised that having a prem baby doesn't mean you're actually going to like somebody. I've defriended a number of people because our paths would never have crossed if DD had hung around inside for 13 weeks more...

zzzzz Tue 05-Mar-13 19:01:22

I really hate this newbie/new poster condescension. I'm sorry, but really ? One of the things I love about this board is being treated like an adult and spoken to plainly. I'm not a newbie or an old timer FFS, I'm me.

Not everyone who hasn't typed a question into mn is some kind of shrinking violet virgin. These are adult thinking amazing tired crabby REAL people, not wounded doves.

It's ludicrous to try to dictate how people behave like this. I try very hard to be kind and compassionate to everyone in my life. I can't imagine anything more rude than not developing some sort of rapport with people you have hashed out some pretty dreadful things with day in day out for years. That doesn't mean I don't wake up every day hoping against hope that someone with "the answers" will pop up. That I don't hope there might somewhere be a boy like ds1 or a girl like dd3.

You don't need a button to say I don't like your response, just type "I was looking for sympathy not information". I don't need any more carrots, anyone to rest their hand on my arm, anyone to tell me "how hard" it must be.

I have 2 dc with sn. I would describe them as mildly time consuming/worrying, professionals describe them as severe. I have not the slightest idea what the rest of you are dealing with, it doesn't matter. What matters is this helps. What matters is occasionally I can help other people instead of just receiving ALL the time. What matters is someone else has done some of this.

TheNebulousBoojum Tue 05-Mar-13 19:01:56

Oh yes, Maryz. One teacher told me DS couldn't have AS because he didn't flap.

EstherRancid Tue 05-Mar-13 19:01:58

i fucking hate the Holland gubbins, but love a honk - see, no rabbits here grin

Well, if you are who I think you are ER then you haven't held back yourself when you thought I'd posted out of line.

I have 'become' robust here. I have needed the board so very VERY badly that I had no choice.

Maryz Tue 05-Mar-13 19:03:23

<whispers: I have no idea what Honk means, but I will join you in hating that fucking Holland analagy so maybe you will be nice and explain>

Ah but some people like Holland! grin

Maryz Tue 05-Mar-13 19:05:52

Yes, but they are wong [gavel]

<offends half of Mumsnet>

grin

Maryz Tue 05-Mar-13 19:06:05

Oops, they are wrong even.

Another reason for feeling like the board isn't always welcoming haven is when you post on a fast moving thread and no-one acknowledges your post, and it ends up feeling like you are butting into a private conversation - the last few posts are like that on here - earlier there were lots of single posts, and now there's a couple of conversations going on. It's hard to respond to everyone, but it's hard to expand your 'group' of you don't?
I try not to offer too much advice on here - I feel quite differently to what sometimes feels like the party line of 'evil LA' - maybe that is offputting to new posters? Who knows?
When I first posted on MN it was becuase ds4 (pre birth) had been found to have some pretty scary indicators. It was fab to talk anonymously about it all.

I hate Holland and Honking for the record.

TheNebulousBoojum Tue 05-Mar-13 19:08:16

tbh, I don't feel the LA I live in is evil, though I think they are wrong in some of their policies.

The LA I came from most certainly IS evil though. The evil people in power use a SATAN recruitment assessment for their staff, I'm sure of it.

TheNebulousBoojum Tue 05-Mar-13 19:10:25

Sorry, not, is it me talking to Maryz that is muddling for you?
I tend to think of the less serious threads on here as an evening down the pub, and I've just lent over the table to have a word with my mate. blush

grin star

EstherRancid Tue 05-Mar-13 19:11:02

Star have PMed you - i've never crossed swords with anyone here, am not knowledegable enough blush

Forgive me. is only 7:15 and I have had 3 glasses of wine.

It's because I had a hard meeting with the school, that had a very promising outcome, that erm, all fell apart at the implementation stage and I opened a bottle, and dh very sensibly keeps topping me up.

Maryz Tue 05-Mar-13 19:13:56

Thanks for that Nebulous - I think I've seen it before, and my first thought was "the V of geese will quickly leave behind any who can't keep up" so it's not too appropriate for here [curmudgeonly emoticon]

Now I remember why I stopped posting in SN - I know nothing about the UK school system and all your LA/CAF/XYZ posts really confuse me.

Maryz Tue 05-Mar-13 19:15:19

I wish I had wine tonight.

I hate fucking soccer <apologises to notactually for going off topic, but has no-one irl to talk to [sob]>

moosemama Tue 05-Mar-13 19:18:06

notactuallyme, interesting you should say that. I was tempted to post a jokey post along the lines of <sniffs armpits - removes invisibility cloak> grin but felt it might be taken the wrong way and as it really would have just been a joke I didn't want to upset the applecart.

I'm not offended by going unnoticed on a fast-moving thread, but it can feel frustrating sometimes and I can see how it might upset others.

In my case I tend to think I haven't really got anything that earth-shattering to say, so people probably just read, nod or shake their head and move on. It doesn't really matter to me, I've said my piece - take it or leave it - but could be quite upsetting for people who are trying to get their point across and no-one seems to be listening.

Again though, it's the same on most forums, especially when threads are in full flow and you are as verbose as me, so that the thread has moved on by the time you've pressed post. blush

Fwiw, I do like the honking, precisely because it is a way to offer support on those threads where the OP is clearly not looking for practical advice, but does need to know that there's someone listening - and caring.

Maryz Tue 05-Mar-13 19:20:09

<ignores moosemama>

My posts are also too verbose, so often a thread has moved on before I have my say. It doesn't stop me though. I just sort of barrel on.

moosemama Tue 05-Mar-13 19:23:13

grin

<sniffs pits again>

Me too, I post and it's a case of like it or lump it - even if I'm several pages behind the thread!

<smiles welcomingly at moosemama>

<ignores maryz>

Hahaha

I do think that sometimes it feels quite hurtful when you post, having thought about it, and it gets missed. And if you tried a cple of times, you might give up. Neb The mates down the pub thing - yup, we all need those.

But, sometimes, you see a title, join in, and then realise that veeryone is chatting amongst themselves.

I don't know, I think it might be impossible to avoid that, and if you did, you would lose the support we give through familiarity.

zzzzz Tue 05-Mar-13 19:31:58

I like honking too, it is so out of character it makes me laugh.

Maryz Tue 05-Mar-13 19:33:30

The pub analogy is right though - if you go into your local and they are all chatting among themselves you simply have to barge in. And if the first group are talking about, say nuclear physics, you have to try the second. And accept that new people will come in and the groups will split and reform.

The alternative to barging in is to sit at the bar with a copy of yesterday's Times and feel upset that no-one is talking to you.

If you barge in often enough, you will suddenly find that you are a part of the groups.

moosemama Tue 05-Mar-13 19:34:46

You're right notactually, it's impossible to avoid, because whenever people visit a forum, about anything, for an extended period they start to get to know each other and that familiarity will come across in their posts.

I think all we can do is be as welcoming as we can to everyone and hope that they will start to feel comfortable enough to join in.

I felt scared to join in for a good year or so before I actually took the plunge, but that was my problem, they weren't excluding me and when I finally did start joining in, no-one batted an eyelid and I wondered what I'd been so worried about.

I think you have some really useful posts on here silver. I am so glad I have read them.

Now it may be my position atm, stress, emotions etc but I am still picking up on the in house bickering. This makes me sad. People are quoting what others have said and making a statement about it. It would be so better said like 'I feel' that way it doesn't become an allegation, which could make someone feel inferior, negative etc

Like me some also feel the board has changed, some even feel it's been over the last few months. I accept the board changes with new posters, change of circumstances etc etc. Maybe it's about getting used to those changes.

Atm I am not in a position to think anything other than how it feels for me. I have been upset immensely today and it isn't the 1st time coming to this board has made me feel shit. I do also understand my life is shit. Due to comments that have been made towards me in the past, I am fearful of what I write, what I say and my time here. I do feel people avoid me, hate what I have to say and think ah here she goes again but again that might just be me.

The thing that used to bug me most is when someone says something I have said previous and then they all come on saying the other poster done good. I did get to the point where I started saying, well I said that, but then maybe this made those who haven't come across me, think who the f**k is she.

I am a parent to 6 wonderful kids, 4 of who have different disabilities/special needs with my youngest being the hardest work (if I am allowed to say that). I don't discuss 3 of them here as I have already been told I play top trumps with my youngest. I am sorry we lead a complex life, it is not my intention. However I feel if I was playing top trumps I would mention the others and there issues.

I have been through an awful lot of life changing and soul destroying stuff in my life right from childhood so apologies if it looks like too much has happened to her she's got to be making it up, I'm sorry, I'm not, I don't have a very good imagination. I also am unable to read people and between the lines so maybe thats what causes my issues too.

I personally don't like the honking, but love a rave.

Right enough from me, I hope you all get what you need from the board. Good luck with your futures and take care x

oh shit, that was a bit long, usually one or two lines but maybe thats another of my problems.

FeelsSad Tue 05-Mar-13 19:41:59

I haven't been posting very long on here and I have always found people on MNSN very helpful.
I have some issues with privacy so tends to name change often but every time I have started a thread, I have had great support from people on here, people who have taken the time to explain and reassure me about things that 6 months on now feel completely obvious lol.

I also get lots of help from reading other people threads, not just the ASD ones because I find that learning about other SEN actually gives me a better perspective on things.

And most importantly, it was MNSN that opened my eyes to the SN world. From the time when the SN board was still on the active convos to more recently learning about ASD and realizing that all the worries we had with ds2 were not because he is bilingual but because of AS. So really it's thanks to MN that ds2 is now being assessed and that I have a better idea on how to support my son.
For that I don't think I can be thankful enough tbh.

Re 'discussions' between posters who clearly 'know' each other... I have never felt it was an issue. I have always thought that these were long standing posters who, because of time, have a better idea of what the other is facing. Which clearly helps to give advice. But very importantly, I actually really like these because it's usually there that I get the most important nuggets of information!

sickofsocalledexperts Tue 05-Mar-13 19:46:26

Devient - 6 kids, 4 with SN. You have it hard! I don't really know the back story, but just reckon you should post away and start afresh.

EllenJaneisstillnotmyname Tue 05-Mar-13 19:56:15

Hi Dev! All opinions welcome to me. smile

I like nearly everything about this board. The arguments can be a bit robust sometimes and that's not my written style. I do tend to bend over backwards to see both points of view, usually. I've said before, I find on forums I can be much more careful what I say, and how I say it. I tend to be much more concise in writing and less likely to stick my foot in it. In RL I'm less careful blush and suffer from verbal diarrhoea.

I try to answer threads or at least bump them if nobody has replied. I was always the one at toddler groups who would spend time chatting to the newbies. I can't always help with some issues, though, so leave them for more experienced posters. Some days I just want a chat with friends. I love a good HONK, iykwim! grin

It feels like a community, to me. But I've only been here 2 years so have no idea about 'the old days.' TBH, they are gone, no point harking back, make the best of here and now, I say.

aliasunknown Tue 05-Mar-13 19:57:19

I admit that I regularly name change due to paranoia about being watched and certain implied 'threats' so do need to be careful.
I have been around for quite a few years now and if it wasn't for this board I would not have managed to get the help I needed for my dc. My only regret is that I didn't discover it sooner as all the years without support have taken their toll tbh.
I do find it hard sometimes as regulars obviously don't know me as whatever my name is at the time so I'm happily chatting away and probably causing confusion. That's my own fault though - I can't have privacy and then expect the regulars to know who I am.
On the whole I feel it's a very supportive place.

"notactuallyme Tue 05-Mar-13 19:07:14
Another reason for feeling like the board isn't always welcoming haven is when you post on a fast moving thread and no-one acknowledges your post, and it ends up feeling like you are butting into a private conversation - the last few posts are like that on here - earlier there were lots of single posts, and now there's a couple of conversations going on. It's hard to respond to everyone, but it's hard to expand your 'group' of you don't? " I relate to this on lots of mn threads, not just SN.

I have had good support, good advice and even though I rarely post people here seem friendly and supportive. I think that there can be a beleaguered feeling on here, like we are all a bit shell shocked from rl struggles and sometimes stuff explodes but only as it does regularly on the rest of mn. (Full moon anyone?)

I feel like I am a long term lurker, been on mn since 2005, but mostly lurked on the sn boards since 2007, sometimes asking for advice, sometimes reading occasionally responding, trying to be supportive. Mostly I don't feel I have much advice to give - so many more experienced posters than me! I don't think I have ever felt unwelcome though and never feel ignored, at the most it might be I am overlooked, or I ramble/take too long to post and the thread has moved on too fast for me.

bialystockandbloom Tue 05-Mar-13 20:27:15

I've been around for well over four years now I think, and pretty much all I've ever seen are posters being incredibly supportive and helpful.

I honestly and truly cannot understand why anyone would feel unsupported here. Some threads get dozens of replies, some just get one or two, but 99% of the time every thread is answered by someone even if it's just a supportive virtual hug and "know how you're feeling" kind of post.

The board can seem dominated by ASD at times (certainly seemed like this a year or so ago). But that (presumably) is just the nature of things. Perhaps more dx are being made. Perhaps parents with dc with asd don't know where else to go (I know I didn't).

Tbh I have stepped back from the board a lot in recent months for fear of being somehow implicitly lumped in with the 'asd' lot (and even worse, the <whisper> 'ABA lot' grin).

The one thing I do feel is an unfair criticism though is that there is somehow a feeling of 'top trumps'. Hand on heard I have never seen that being said by anyone to anyone else. As so many people have said, 99% of posters here are nothing but supportive, genuine, caring people.

Only criticism I have is bloody NCers as I can't keep up, and am always looking for Ellen with her spreadsheet grin

EllenJaneisstillnotmyname Tue 05-Mar-13 20:29:47

I've lost the plot, bialy! grin

PolterGoose Tue 05-Mar-13 20:32:48

What a fab thread, thank you silverfrog

I love MNSN as it is, I joined MN nearly 4 years ago after a couple of lurking years when I was new to, and nervous of registering with, anything online blush Until about a year ago I posted sporadically, name changing regularly every time I made a twat of myself. Now I've found a name I like I am going to try not to need to namechange again grin

So, really, I am a relative newcomer, only posting as PolterGoose for the last 4 months. I like that people know each other, because it makes me feel part of something when real life is so isolating, and love it when new people find us and join in and have that same sense of 'wow' when they find what they need.

I have found the recent deleted threads really challenging and have questioned motives, I was accused of bullying and being part of an elite for asking questions confused I do find it offensive and upsetting when provocative threads are started for no apparent reason, whatever the spirit of MNSN is, those threads just felt wrong.

I know that sometimes I post in a hurry, maybe because the OP seems desperate, and I don't want to not say something, and this can lead to misunderstanding. I know if I read a long OP I may only register some of it, what I identify with, and respond to that, which can make for odd responses sometimes.

I love that no matter how many times the same question is asked there is someone who will respond for the gazillionth time in the same kind and informative manner they did the first time they answered that question.

I am guilty of responding to those who are at an earlier stage of their SN journey than me in a way that reflects what I wish I had been told. This may not be what is being sought, but I can only offer me and my experience, which is all I have.

There are many techniques and methods put forward that make me go hmm and I get taken over by my inner Ben Goldacre, and then I remind myself firstly that the placebo effect is scientifically proven and secondly that I've done woo stuff myself so I make myself sit on my metaphorical hands.

Like many, I think MNSN is a very special place. My life and, most importantly, my ds's life have been dramatically improved as a direct result of this board. I am a better person for being here.

lougle Tue 05-Mar-13 20:49:26

I'm back from my meeting and have caught up. Still digesting though...

lougle Tue 05-Mar-13 21:14:46

OK. To be honest I feel a bit deflated. I'm not feeling too articulate. I'm failing to see how respondents to threads can be held accountable for offering advice when people say they need advice.

We all refer to our own experiences when we post, I'm sure. In my case I came on here with no expectation of DD1 being where she is now. She was just a 'bit behind' and they wanted to give her a 'bit of extra attention because she's so lovely' when I first posted.

Had I not had the advice of posters saying 'you can do this by yourself, and this is how...' I would never have got a special school place for her. The INCO was trying to fob me off with an 'IPA' rather than a statement, and by the time she started the statement process, it would have been too late for SS.

Had I not had the advice of people here, and a good friend in RL, urging me to consider my options, DD2 may still be at the school which was so wrong for her that she changed into a different girl before my eyes. She still has something going on, I'm sure of it, but whatever it is, the school she's at now is so much more suited to her.

It's my personality to want to do something to fix the problem I face. My natural mode is therefore going to be 'this is what you can do to sort that...'

Maryz Tue 05-Mar-13 21:22:36

I don't think you should feel deflated lougle.

I have realised over the years that some people who ask questions don't really want answers; conversely some people who sound as though they are angry are upset, some people who are really miserable just want someone to hit out at.

That is the same in real life as it is on here. But here is sometimes becomes even more personal, because for many people MN is a place of last resort - it is literally the only place I can be honest for example. And sometimes that honesty about my own feelings or about others can be so strong that I can end up hurting or being hurt when no hurt was intended on either side.

We as responders to a thread can only give of our best - but we have to do so in the knowledge that it might be helpful, but it might not. We take a chance. And I know I have got so much support on here that I can afford to spare a bit and if someone doesn't like what I say I just shrug my shoulders and go on to the next thread.

Obviously if someone genuinely doesn't want me to comment on their problems in teenagers, for example, they can say so. I don't mind - I'm long beyond being upset by my advice being rejected grin. But that won't stop me trying to help the next person who comes along.

I think we all need to learn to hide more threads. If we ask for advice and don't get what we want, fine, say thanks and hide the thread. By the same token, if we offer advice, and it is mis-read or mis-understood or not appreciated, then also hide the thread.

Because we can do that you know even though I always unhide because I'm nosy and want to see if people are talking about me

And none of us should stop posting if we upset a few posters. Because for every poster who may be inadvertently upset sometimes, there are many more who feel listened to here.

Maryz Tue 05-Mar-13 21:23:44

Jaysus, that was yet another missive shock.

hazeyjane Tue 05-Mar-13 21:28:12

Don't feel deflated, Lougle. I think there is a place for both the hugs and honks (apologies Hothead!) and straightforward advice. I am always amazed by how much you seem to know, at the start of the journey into the unknown that is having a child with sn, all the talk of statements and leas and ISPs etc etc is utterly overwhelming, because (in my case at least) you are often still in the, 'what the fuck is going on' stage. But having that straight talking advice is, IMO really important, and I think if it is not what you need at that time, the it is fine to say, 'that is all a bit overwhelming, I can't take that on board at the moment'.

The trouble with hiding threads, or has been for me in the past, is being accused of not taking advice, not caring etc cos you didn't come back to it. So again it's swings and roundabouts RE persons perception.

Just saying Hi, to Ellen and sick post afresh about what issues or which child lol

zzzzz Tue 05-Mar-13 21:38:19

lougle you do good, lots of good.

Maryz Tue 05-Mar-13 21:39:59

But no-one has to take advice devient.

It would of course be polite to say "actually, I don't agree with all of you on this, I'm going to do X, Y or Z. I'd love a bit of support doing it".

I've done that before, and got support when I asked for it.

I've never seen anyone criticise someone for saying "thanks for the advice, I'm thinking about it but it's too hard/complicated/not the right time at the moment".

inappropriatelyemployed Tue 05-Mar-13 21:42:19

Indeed you do Lougle. All we can do is our best. We post with the best intentions because that is the sort of board this is.

I certainly don't sit in judgment on anyone's advice to me.

MareeyaDolores Tue 05-Mar-13 21:43:21

Some of this is about Internet manners I think.

For example, I started out lurking, just 'reading' people's posts as if I had found a particularly relevant newspaper. My own opinions didn't seem worth 'publishing' for busy people to waste time reading.

I then adopted a 'letter to the editor' mentality, and posted a couple of carefully prepared comments, not expecting any feedback but hoping someone might find them useful.

After a while, I began to use the board interactively, but in a restricted way: answering like an academic journal's online 'rapid response' facility, or asking for help, but like an ad in the newsagent window.

Eventually I realised it was like sign's pub analogy and began to chat, masking shyness with a 'take-me-as-you-find-me' approach, but I do occasionally get tipsy and i think i've accidentally offended people too.

The one thing I am really upset by is the thought of SN top trumps accusations and/or related bad feeling. Those posters with exceptionally challenging circumstances (eg devientenigma now, and Riven back in the day) are in my mind, the senior consultant professors of the board.

Not in a patronising what-a-saintly-SN-parent way. In the definitely been there, still got the t-shirt, probably wrote the book way.

which I agree with Maryz, but it still happens

Bring Back Riven..........do you remember all those threads?

she did nc a few times but still finds it difficult to post on mn.

Maryz Tue 05-Mar-13 21:51:56

But that isn't because she was driven away. Riven's difficulties with remaining anonymous were because she went public in real life.

The bring back Riven threads were supporting her confused. You can't criticise people for trying to support her. At the time she wanted the publicity to try to get help she badly needed.

hazeyjane Tue 05-Mar-13 21:52:22

I don't know, one of the things I like about it here, is that I don't think there are any senior statesman types. Everyone's circumstances are so different, that no one posters experiences are any less or more valid.

lougle Tue 05-Mar-13 21:53:54

I've looked back at some of my early posts on here....how different I was then.

The idea of a statement was raised on my 2nd thread about DD1, by Atilla, that was in October 2008. It took me until September 2009 to actually apply for one, but the seed had been planted then.

MareeyaDolores Tue 05-Mar-13 21:54:44

Am definitely guilty of recycling other people's advice and mottos (imitation is the sincerest form of flattery wink )and I've never been any good at remembering where I learned something.

My brain is fudge tonight, to the poster above who pointed out how scary 'get a statement and apply for DLA' can be [thank you] for the reminder that sometimes (often?) it might be too blunt, too much and too soon. Cos that's pretty much my standard response blush, on the basis that whatever the SN situation, good education and more resources will always help a bit.

Lougle, I'm sorry you're a bit deflated. If an OP finds my post unhelpful i try to remember that mine is balanced by others, and hopefully the whole is more helpful than the sum of the parts. Also that in a searchable archive, one day a random lurker might find it handy.

I know that Maryz, I do know Rivens circumstances and she is having a really tough time still.

Maryz Tue 05-Mar-13 21:57:10

I was very naive when I first posted, eleven years ago this month shock.

I thought a bit of extra help and understanding and he'd be fine. How wrong was I.

I agree with that hazeyjane, I don't think having been here a long time makes a poster any better or more important in any way. In fact, sometimes I find myself making flippant comments because I've seen it all before and I need the occasional kick up the arse for that.

The most helpful posters, imo, are posters who are about two years ahead of the "asker" on the diagnosis timeline at any particular time - they are up to date with useful knowledge and just far enough along to have got over the initial shock.

If that makes sense.

lougle Tue 05-Mar-13 22:00:51

I'm at a loss to see what can change. Every poster has to take some responsibility for themselves.

If you want support on a long running issue, then don't name-change and say 'name-changed to protect my annonymity but you all know who I am...' well, no, we don't all know who you are, because you name-changed.

If you want to have a whinge but are too exhausted to take action, don't write 'what can I do' or 'I don't know what to do' or something else that implies that you want to do something. Just say 'I feel crap' or 'I'm so stressed by x' or something else that gives the clue that you want a moan, not a solution.

If you want advice and practical help, don't say 'I've got this massive problem but I'm not willing to tell you what it is because it's too private.'

I'm not setting rules, by the way! I'm merely saying that what you say in your OP will dictate the responses you get.

Maryz Tue 05-Mar-13 22:01:47

x-posted.

I don't get why Riven is relevant on this thread, though confused

No-one on MNSN boards caused her difficulties, and if she posted here for support she would get it.

EllenJaneisstillnotmyname Tue 05-Mar-13 22:01:52

Yes, agree with that, Maryz. Though I do find the 'early days' are those most firmly imprinted in my psyche. Even though I'm 10 years past DX, the fear at that time is still very fresh. Despite being out of date a bit with advice, I can still empathise.

and now I feel I can't do right or say right for wrong which is another problem here, so now I will step back in fear of doing it wrong

It was nice to see someone remember friends and have a tiny reminicent (sp) moment.

EllenJaneisstillnotmyname Tue 05-Mar-13 22:02:51

Oops, was agreeing with the '2 years ahead bit.' Will catch up on later posts.

Maryz Tue 05-Mar-13 22:03:20

Yes, lougle.

And if you post an op (as I have done in the past) and people give you the "wrong" answer, ignore it and open the wine

grin

lougle Tue 05-Mar-13 22:04:12

Maryz, my favourite quote that shows how naive I was:

"I think that they are thinking along the behavioural/emotional development lines rather than intellectual, as they feel she needs 1:1 during the free-play element of the session rather than the directed time."

Mmmm yes, that would by why at 7.3, she can read 21 words by sight, can only write 3 words, has no sense of danger, etc, etc grin

I think it is important to acknowledge when acusing of cliquage, that posters who keep their name in a post in the hope that being known to some will get support can sometimes mean they take a big risk in doing so.

Maryz Tue 05-Mar-13 22:05:37

Why is it a problem devient. You haven't posted anything wrong. This is a flowing conversation, isn't it?

I can only empathise too. I can advise about teenagers a bit, but I'm useless with statements or school or anything practical. I am very good at empathy, and i have a 1st class honours degree in stopping people feeling guilty and blaming themselves for things they should have/could have/might have done grin.

lougle Tue 05-Mar-13 22:08:32

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Maryz Tue 05-Mar-13 22:08:41

I suppose I don't worry about anonymity any more Starlight, because I'm recognisable from my posts to anyone who knows me. And I would be useless at trying to be anonymous as I'd forget what I had said to who.

I've decided to just post on here - and if people recognise me irl, so what, I'll cope.

lougle, two years after ds's diagnosis I actually investigated whether kids could be cured of AS as I thought he had - little did I know that better management simply meant he could hide all his "odd" behaviour and it came back with a bang when he got to secondary [sigh] I can't believe how naive I was.

Mary's, my posts were used against me in the run up to tribunal. I knew I was being 'watched' but needed to post in my usual name as my back story was relevant.

Maryz Tue 05-Mar-13 22:14:41

I saw that before on one of your threads Starlight, but I never figured out exactly what had happened.

I suppose, for me, there was never much in the way of help and no legal action involved with ds, so unless the police decided to use my posts against him (and I can't see a law court recognising my anonymous mummy moans as evidence), I'm not too worried.

PolterGoose Tue 05-Mar-13 22:16:15

I think you parents of teens are invaluable. We are approaching transition to secondary and I need to know what is possible, what your schools do for your children who are like my child, because no one else will tell me what actually can be done and what might work and all the things that are worth trying and demanding.

I personally feel that the harking back to days of old is quite excluding, as if us newer posters are irrelevant and somehow less worthy. This is an ever-evolving community and it is that dynamism that makes it vibrant and exciting.

lougle Tue 05-Mar-13 22:18:23

I'm not fussed who knows who I am on here either. Having said that, I self-censor anything which I wouldn't want someone to know I've said. So, for instance, I never share any knowledge I gain as a Governor of DD1's school. I very rarely post about family issues, because I wouldn't want my wider family to find out I'd been talking about them.

I couldn't care two shiny hoots if DD2's old HT sees my posts, so I was quite comfortable posting about that grin

Maryz Tue 05-Mar-13 22:18:52

Yes Polter, it would be very boring if only people who had been around for years posted. We would all hate eachother by now and the site would implode in a moldie-like way grin

The one difficulty I have as the parent of a teen though is that I hate the thought of frightening the shite out of everyone sad. It does put me off posting sometimes.

Anyhow, I'm off to bed. Night all smile

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Maryz Tue 05-Mar-13 22:21:13

Oh, yes, I don't post about family (apart occasionally about dh's, and I don't care if they see it) or rl friends - at least I don't say anything about them that I wouldn't say in real life.

And I take care about what I say about my children, knowing that they may one day read it.

Having said that, I'm very lucky with my rl friends. I don't recognise many of the petty arguments and fallings-out that so many seem to post about.

Maryz Tue 05-Mar-13 22:25:31

Right, I didn't see Mareeya mention Riven so didn't know why you had brought it up, sorry.

devient, just chat. Don't make it an agenda, or apologise or back off or out. It makes it hard to chat back to you. Just talk as if you were on a phone to a friend. Don't try to look for cliques or gangs or people twisting words, don't look back on the thread, just carry one talking.

At least that's what I do, I just carry on regardless.

lougle Tue 05-Mar-13 22:26:12

Oh for crying out loud hmm

tbh Maryz I don't have any friends, they all dumped me over the years due to not being able to handle DS. I do chat on the phone but I mostly listen to their problems. Which is maybe why it's easier to walk away. I knwo it sounds sad having no friends but it's reality, I am that isolated, made even further so due to DS, I'm sorry.

crappypatty Tue 05-Mar-13 22:28:52

I feel bad, because I ask for advice but rarely give any. Mainly because I don't feel very knowledgable and what I do seem to come up with seems to just be my own experience of a situation which isn't most probably what posters are looking for.

Often I type replies and then delete without posting.

Maryz Tue 05-Mar-13 22:32:05

Well make friends here.

Stop looking to take offence, just chat away, talk innane nonsense like the rest of us.

crappy, you are making a basic mistake. I bet you preview your posts. That is a dreadful thing to do, because if you preview you read what you have written and if you are anything like me you decide it's a pile of shite and delete it.

You have to conquer your fear, and just type and post. No hesitation, no deviation, just type-post all one motion. And your experience is always useful, as is sympathy and support.

lougle Tue 05-Mar-13 22:32:12

crappy can you try, one time, hitting 'post' instead of deleting? The posts with your own experiences are worth 100 of a post with text book answers. Those posts are the ones that get us through the tough times.

Last week I posted about DD1 peeing on the floor. I was so angry. Someone said that their DC had peed in a toy. It made me feel better that I only had to clean the floor grin

I do have friends on here, cybermates, the feeling is mutual, they can't post or have said so earlier on.

hazeyjane Tue 05-Mar-13 22:33:51

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Maryz Tue 05-Mar-13 22:35:52

Well that's weird.

PolterGoose Tue 05-Mar-13 22:36:09

crappy but it is your experience of a situation that is valuable. Sometimes just saying "Me too" really is enough to make someone feel they are not alone. I also like the "what <insert name of wise poster who has already responded and who you agree with but could never write your response in such a kind, considered and concise manner> she said" response.

Maryz Tue 05-Mar-13 22:37:20

I don't see why anyone would feel they can't post. I have never seen lougle being aggressive to anyone.

Just stop reading between the lines. Just post, chat, banter, mess round, talk crap. I've been doing it for years and have only made a couple of enemies (at least there are only a couple who have said they can't stand me. I'm sure there are more who are keeping schtumm).

lougle Tue 05-Mar-13 22:38:19

So, tell me. What is to be gained by regularly pointing out that posters who can choose to be annonymous and choose to post where they like, don't want to post here?

What do you want us to do?

MareeyaDolores Tue 05-Mar-13 22:41:48

Lougle and deviant are more likely to sort it out themselves (I think) if everyone else keeps inteference to a supportive back-pat.

Though hazey, I have the same bafflement about twisted words. Perhaps it'smisunderstamdings which snowbballed?

PolterGoose Tue 05-Mar-13 22:42:46

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starfish71 Tue 05-Mar-13 22:45:37

Have only ever posted infrequently here, lurked for years, gained massive support when I have posted and learned tons when I have just read. Attila will be forever in my head with the phrase "you are your child's best advocate".

I have managed to somehow get both my boys statements with all your advice and today when I feel so crappy I felt I needed and could post for support. I think this section is wonderful and grateful i am not alone.

Maryz Tue 05-Mar-13 22:46:06

<slaps lougle around head with wet fish>

Leave it, lougle, you haven't done anything wrong, so just tell me a joke or something to lighten the mood. Have you seen this thread by the way grin. An example of mumsnet at it's best.

devient, seriously, just join in the chat. Just talk. If you did that, then everyone would just chat back. And if there are other people who don't like posting on the main board, there is OTBT where you can all get privacy if you want it?

lougle Tue 05-Mar-13 22:46:33

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Theycallmestacy Tue 05-Mar-13 22:48:30

Thanks had to press post quick before I delete smile

I have nc as a few posters have commented on the problem of shortening my name, dd was singing this song earlier and seemed appropriate.

I have always felt welcome as a newbie, been here under a few names but was crappy for the longest. I know it's my own inhibitions and confidence holding me back from posting more.

Maryz Tue 05-Mar-13 22:48:55

Oops, I missed that lougle.

Has it gone?

It is all so unnecessary [sigh]

lougle Tue 05-Mar-13 22:52:30

X-posted.

Starfish I do believe you have misquoted Atilla. The correct quote is:

"you are your child's best*, and only,* advocate"

The commas are very, very, important...they add an air of gravitas that can only be achieved by Atilla. In fact, I always imagine her saying it in a voice like a soap 'Next time on...'

Maryz...jokes. There were some good ones on Radio 2 the other day...

"I saw a bloke on a tractor shouting that the world is gonna end
I told me mate who said dont worry he's always doing that.....
its just Farmer Geddon"

Maryz Tue 05-Mar-13 22:54:33

grin

That's pretty awful better.

moosemama Tue 05-Mar-13 22:56:48

Starfish I find myself actual saying "you are your child's best and only advocate" to people in rl! blush That phrase also helps me to stand up for my dcs in meetings, when before I was letting people walk all over me for fear of being too pushy and getting a bad name or whatever.

Attila is one of my all time heroes on this board, she was the one that really got me off my backside and pointed me in the right direction to getting help for ds. The first time she posted with those words, whilst telling me to apply for a statement immediately, they made me take a step back. I thought she was being all pushy and militant, but she was right on the money and it didn't take me long to learn to listen to her and others like her. She is also one of the kindest, most generous people I've met on MNSN - I have enormous respect for her.

Maryz, thanks for that link - you just made me chuckle for the first time today. smile

lougle Tue 05-Mar-13 22:58:00

Ouch...have read the OP.

My mongrel pure-bred staffordshire bull terrier xwhippet has a particularly lean frame and surprisingly hard head.

One day, I came in from the school run and he was so glad to see me. As I bent down to fuss him, he jumped up to greet me.

Seeing stars is not the word. I literally crumpled to the floor, sobbing without sound. Poor DD2 was completely paralysed.

zzzzz Tue 05-Mar-13 22:58:18

I agree with this and wish someone who disagrees would answer.

"So, tell me. What is to be gained by regularly pointing out that posters who can choose to be annonymous and choose to post where they like, don't want to post here?

What do you want us to do?"

I refuse to feel I have excluded people or been mean to people just because it is stated repeatedly. I find some posts totally incomprehensible.

Being told you are cliquey and gang up on people is really unpleasant. What is the correct response to this?

Being told the board used to be better nicer, basically before you showed up, is rude and nasty.

I'm getting mightily fucked off by all this.

lougle Tue 05-Mar-13 22:58:45

"I'm pleased to say the service is excellent on The Eurostar, because I've heard its murder on The Orient Express."

moosemama Tue 05-Mar-13 22:58:56

Cross posted with the only lougle.

Ds1 would love that joke - he loves anything that plays on words. Which is a bit confused considering how literal he is generally.

starfish71 Tue 05-Mar-13 23:00:45

I stand corrected smile and when I didn't object to the refusal to assess for DS1 3 years ago she and mums net SN didn't give up on me! When it all went pear shape at comp she said it again and I listened!

lougle Tue 05-Mar-13 23:00:53

"What do you say to a bear to make it eat cheese?"

I dunno, what DO you say to a bear to make it eat cheese?!

(said in a Cockney accent) "Come on, bear!"

PeneloPeePitstop Tue 05-Mar-13 23:01:24

I've never fitted in here. Your face really does have to fit. There is an undercurrent of judgmental - this is what I do, why don't you.

Maryz Tue 05-Mar-13 23:02:37

You don't need a response zzzz

The hundreds of supportive threads, many of which are started by "newbies" looking for help is proof of how welcoming, supportive and sympathetic this board is.

All you lot who regularly post on it should be very proud of yourselves.

moosemama Tue 05-Mar-13 23:03:06

Lougle, my nearly 9 stone boxer x gsd did that to me. I blacked out and he then decided I was fair game, given that I was now lying on the floor, which is obviously a sign I wanted to play - so decided sit on my chest, smack me in the face a few times with his enormous hoof paw and slobber all over me. hmm grin

Pets 'ay, who'd av'em?

zzzzz Tue 05-Mar-13 23:03:19

Well if I knew what I was doing that might make sense.

zzzzz Tue 05-Mar-13 23:06:07

I don't need but would really like the Groundhog Day of this to end.

inappropriatelyemployed Tue 05-Mar-13 23:08:27

It's a shame you feel so upset about everything on this board Dev.

I've not followed your history on this but is seems that people sometimes don't share your perception of what is happening with your posts.

I am not sure people can change what they do as they don't agree with your perception.

Perhaps you just need to go 'cold turkey' and take a complete break.

lougle Tue 05-Mar-13 23:08:32

American, but for moosemama's DS

PeneloPeePitstop, I'm sorry you feel that way. I've seen fantastic support given to people of all sorts here.

PeneloPeePitstop Tue 05-Mar-13 23:09:35

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moosemama Tue 05-Mar-13 23:10:21

I'm sorry you feel like that PeneloPee.

I have regularly asked for and listened to advice on here, but ultimately walked my own path. Lots of people on here felt I should have taken our LA to tribunal over the specification etc of ds's statement. I didn't feel I could at the time for various reasons - not all of which were things people on here would have known about. Then when it all came back to bite me on the arse, no-one said I told you so or was in judgemental in any way, they just held my hand and helped me navigate a new way round the problem.

There are and have been in the past a few posters who are/were passionate about what they have found that works for them and are/were probably more vociferous than others for that reason, but generally people do genuinely just want to help. I can honestly say that in all the years I've been on here I have never felt judged, even though I don't always listen to advice and sometimes monumentally cock things up as a result. blush

lougle Tue 05-Mar-13 23:10:22

I have white wallpaper. Call me stupid. Luckily, it washes, because the said dog keeps wagging his tail so hard, he makes the tip bleed. Then he sprays blood all up my walls, radiators, doors....forensics would have a field day.

lougle Tue 05-Mar-13 23:11:38

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48Hours Tue 05-Mar-13 23:12:31

I am a regular namechanger paranoid
I first started on mn years after ds recieved his diagnosis and tbh am regually shocked at the battles some of you face.
It is one of the reasons I don't feel able to post advice, we have just stumbled through and through a combination of some excellent professionals and the severity of ds's disability have meant services have always been available -- a mental breakdown on my part helped--
I also feel somewhat guilty, we get a good support package and I know many other parents on here have to fight for everything.

MareeyaDolores Tue 05-Mar-13 23:14:07

Right then, have skimmed this 'a complaint is a gift' so am now world expert in fixing SN board related difficulties wink.

What 3 simple things could make a big difference to those who feel unwelcome?

moosemama Tue 05-Mar-13 23:14:18

Thanks for those word-play jokes lougle, ds will enjoy them.

My dad's Great Dane used to do the tail-splitting, blood spraying thing - he ended up having to have half his tail removed in the end as it refused to heal and he couldn't stop wagging it 24/7. I can confirm that not only do Great Dane's tails bleed a lot - they blooming well hurt when they hit you. hmm

PolterGoose Tue 05-Mar-13 23:16:40

Please don't feel guilty 48Hours I would really welcome hearing the examples of good practice as it gives us a benchmark of what we should all be getting.

inappropriatelyemployed Tue 05-Mar-13 23:17:14

We all try to help each other here. Some need more help than others and I have seen some threads run in to 100s with posters trying to figure out complex problems to help someone

Maybe I am going to be provocative and/or outline here but, to me, that sort of effort really does not deserve this needling.

It's an internet forum. Some people have got shit lives. People try and help and it seems like regular posters are just getting a kicking for it.

It's really too much to demand people respond to you in a certain way or passively aggressively hold it against them for not saying what you want to hear. Or resent people for posting regularly.

It is an internet forum. People are trying to help. End of. What do those of you who are moaning about cliques etc want? What do you want to change? Stop moaning and get on with it.

zzzzz Tue 05-Mar-13 23:17:40

It might sound strange but I feel much better when I hear someone somewhere is getting appropriate support. The simmering rage I feel at ds1s lack of support is easier to cope with If it is a mistake not the plan.

lougle Tue 05-Mar-13 23:18:13

My children hide in the porch to stop him hitting them with his tail blush

I try to explain that if they would only stroke him and tell him he's the best thing since sliced bread, he'd actually calm down.

48 hours it can be really helpful to hear what provision other people have, even if it makes people a bit envy.

I'm always harping on about DD1's school, because it's a great example of a school which uses TEACCH and is passionate about every child being the best they can be.

inappropriatelyemployed Tue 05-Mar-13 23:18:33

or what MareeyaDolores says

lougle Tue 05-Mar-13 23:19:54

zzzzz, it's always the plan, just that some areas didn't get the memo in time hmm

moosemama Tue 05-Mar-13 23:20:35

I think I must be very very tired, as I'm not understanding where some of these posts are coming from or what they're getting at. I genuinely do want to understand and try to work out a way for everyone to feel validated and included, but I'm just not up to the job tonight. Sorry.

Actually, I'd better go to bed now, because I have to be up early tomorrow to go a funeral over a hundred miles away and will then have a stressy ds1 to deal with when I get home, because his routine will have been thrown out by me not being home all day.

I'm just praying we can make it back in time to get to the chip shop for their tea, because if we miss gluten free chip night he will seriously never forgive us.

Maryz Tue 05-Mar-13 23:22:14

I don't understand your last post Penelopee, I really don't.

devient seems to be getting upset at everything, I genuinely don't know why. But if mumsnet is upsetting her, is it really unreasonable to suggest she possibly takes a break from the upset.

And I don't agree that we are a clique [baffled]. I'm trying to think how often I have talked to anyone on this thread - not often I don't think.

lougle Tue 05-Mar-13 23:22:27

I'm also going to have to admit defeat. Unfortunately, my children won't wake any later because I'm posting on this thread.

moose, I hope the funeral goes as well as it can do.

zzzzz Tue 05-Mar-13 23:23:24

moose they don't make sense. Hope tomorrow goes smoothly, it sounds exhausting.

PolterGoose Tue 05-Mar-13 23:24:17

thanks for moose

lougle Tue 05-Mar-13 23:25:20

Although, gluten free chip night does sound very useful. That must take a bit of doing, to get rid of all the batter remnants.

Maryz Tue 05-Mar-13 23:30:50

We just got a flyer in from Lidl with loads of gluten free stuff in it. I'm going to take a trip over there next week, as ds has a friend with Coeliac disease and I never know what to feed him.

<completely irrelevant>

I hope your funeral goes ok sad.

inappropriatelyemployed Tue 05-Mar-13 23:35:37

Sorry to hear about the funeral. Hope it goes well.

I'd rather spend time posting responses than engaging in this self-defeating argument.

We are not a clique but circumstances can make people feel excluded in life as we are not all equal. But we all have our own crap. Just join in. You are welcome whether you choose to believe it or not

Dev9aug Tue 05-Mar-13 23:39:25

I have felt very supported on this board. I have had messages of support when I felt shit and been given advice when I needed it. Some advice I follow, some I don't bother with, my life my choice.

I don't think anyone needs to justify their advice or posting style. This is the beauty of this board that most posters have their own field of 'expertise', for eg. IA will give excellent legal advice, lougle is able to quote SENCOP, moondog, starlight,bialy etc know their ABA stuff and mareeya gives excellent advice with a touch of humour which always puts a smile on my face. I think it is unfair to ask these posters to change their replies to generic one size fits all.

And I don't think chitchat is bad at all, some of the light bulb moments for me have happened when I have just been randomly talking to posters about stuff totally unrelated to the thread in question.

TheNebulousBoojum Tue 05-Mar-13 23:40:38

'I've never fitted in here. Your face really does have to fit. There is an undercurrent of judgmental - this is what I do, why don't you.'

That's odd, I've never felt like that. confused
DS doesn't have a statement and got the support he needed in secondary with only a minor amount of bolshieness on my part. He has no co-morbids other than the AS.
I've read a lot of ideas and suggestions and information, and then as the person who knows my child the best, I've selected what I wanted.
I've never felt judged here, only by others without experience of sn.
But I'm with Maryz, if you aren't enjoying the boards, there are many other sites out there to try where you might find the support you need.

Dev9aug Tue 05-Mar-13 23:41:40

maryz thank you for proving my point about chitchat. Nothing is irrelevant here, now I can add another place to my list to shop for gluten free stuff. thanks

Dev9aug Tue 05-Mar-13 23:45:20

'I've never fitted in here. Your face really does have to fit. There is an undercurrent of judgmental - this is what I do, why don't you.'

Don't agree with this at all. I am a bloke posting in a predominantly female forum and I have still received advice and support when I have posted here. Dare I say it, I have even made some friends here.

inappropriatelyemployed Tue 05-Mar-13 23:54:15

'......undercurrent of judgmental...this is what I do' etc

It is such a passive aggressive response. Just because people have got different opinions doesn't mean they think you are wrong or that you are unwelcome.

That is just life. Some people let their babies cry to sleep, some don't. Some are on breast feeding crusade, some would never want to do it. Some people don't let their kids eat crisps, some don't have any choice do!

We are all different - people aren't mean or bad or judgmental because they assert their opinion.

inappropriatelyemployed Tue 05-Mar-13 23:55:48

Dev how are you doing? How is the ABA going?

Dev9aug Wed 06-Mar-13 00:05:42

We are doing well IA, we are on a break from ABA at the moment, but we start again next month with the new providers.

We had a really good week last month and I was thinking of you. it is such a shame that you ended up with the ABA consultant/TA you did because it could have been so different for you. We are fortunate in that sense that we have the luxury of changing people whenever we want within reason for now at least. This will be our third provider in just over a year and I have lost count of tutors now.

AmberLeaf Wed 06-Mar-13 00:08:12

I have read loads and loads of threads on here and got lots of helpful info from them.

If I have something I need to check I actually come and search here before google!

There are lots of posters here who due to their battles, are very well informed and I'm grateful that they share that here.

I have directed posters over here from other topics knowing they will find what they need to know and I see lots of 'newbies' welcomed.

I post sometimes, but I know that on an advice basis there are others who are better placed than me to offer it.

Ive started a few threads and have been responded to helpfully and in a friendly way despite the fact that I don't post that much here.

Sometimes though, I avoid this section because I want to escape it all and because some threads are to close to home, so if Im struggling I find it hard to read about someone who's struggling too.

I also got fucked off with all the passive aggressive stuff, I have tried, but, yes it is very much like groundhog day, whatever anyone says it will be taken in a bad way.

I really can't cope with the negativity. My life has enough negativity.

SallyBear Wed 06-Mar-13 00:12:31

I am stuck in a strange place where this board is concerned. I have 4 kids - 3 with SN. Two with ASD, one being non verbal the other being rather too verbalgrin, two with a craniofacial syndrome.

I have dealt with;
Cleft palate speech articulation issues
Tracheostomy
Gastrostomy
Hearing impairment - BAHA, BTE, Bone Conduction hearing aids
Respiratory issues - Obstructive Sleep Apnoea, CPAP & sleep studies
Children going through multiple plastic surgeries
Aspergers
Autism
Dyslexia
Dyspraxia
Sleep issues

I have experience and knowledge in all of these fields, yet at times I feel that I have nothing to add as it feels like you are the only one dealing with nasty medical crap that no parent should be putting their child through.

Dev9aug Wed 06-Mar-13 00:17:30

'you are the only one dealing with nasty medical crap that no parent should be putting their child through.' Yes, I think we all feel like that at some point, some more than others. I am really in awe of you sally because you have so much knowledge about so many things and are always very positive.

zzzzz Wed 06-Mar-13 00:19:32

sally our situation is different but when dd was ill we spent a lot of time in hospital and sometimes the discussions you make sear your soul. You are the only one on the board at the moment that I know of, but even if I don't know what you know I've been in dark days too many times not to send a hug and a honk. I mostly talk about ds on here but he is not my biggest worry. Our other situations are not solvable or really helpable.

You have much to add.

zzzzz Wed 06-Mar-13 00:20:13

Decisions not discussions aaaaargh

SallyBear Wed 06-Mar-13 00:44:37

Thank you zzzzz and Dev9Aug. That's very kind of you both. Maybe I am the only one dealing with some of this stuff, but I hope that one day I will be able to be here on MN for someone else who is in a similar situation to the one I was in when DD was tiny and fragile.

I do try to stay positive as I do genuinely believe that the day I can't find any humour in something, is the day I am beaten. It's not happened yet! smile

MerryCouthyMows Wed 06-Mar-13 01:20:27

Some posters on MNSN will be better with hand holding and tea and sympathy. Others of us are more likely to offer practical solutions.

I know that I can often be guilty, depending on my own feelings and health and emotions at the time, to either be exceedingly practical to the point of what might seem like bluntness sometimes, and at other times to explain how I am affected by the same issue, which (I hope!) doesn't come across as 'me, me, me' (not the intention at all!), but more as a 'you are not alone even though I don't have a solution to this problem'.

I am a solutions based person. I'm a bit 'clunky' when it comes to trying to 'do' sympathy rather than solutions. I second guess myself when trying to show my sympathy at how hard a situation is, I worry and get nervous that I'm going to type (or say, in RL) something that offends or upsets.

So if I can't think of a solution, or haven't found one yet, then I will try to convey my hand-holding by trying to commiserate.

I feel like I'm not very helpful if I can't offer a solution tbh.

I have been here for far too long since 2004 under my original reg number and name. Back then I was mostly a lurker, with the odd aaaarrrrggghh help me! Post. Back then, DD was only 6/7yo. She's now 15yo.

The board has changed - it has got bigger, there's more combined experience held in this board than in most LEA's...wink

There are now people with DC's at all stages of life, from babies right up to adults. People who joined when I did, with 6yo's, are now looking at those same DC's turning 15 and heading ever closer to adulthood, and all the unknown that holds.

I think we all try to include and support newbies in the best ways we each can. It's sometimes hard though, 14 years down the line in my case, to remember just HOW much having a DC dxd with a disability can throw you for six and knock you over emotionally right at the start of the process.

I am VERY guilty of this. I was lost and floundering back when I was told by a SW when DD was just 7mo that she would never walk or talk, she would be a vegetable, and as I was only 16, I wouldn't be able to help her as much as she needed, and I should put her in care and forget about her, as I could easily have more DC's when I was older.

If I think back to how I felt that night, I can see how sometimes, all new posters want right away is someone to hold their hand and say that it might not be as bad as that, it's just a name for a problem, a worst case scenario that Dr. Google has thrown up and not a definite outcome.

Thing is, so far down the line, it's not always that easy to hold onto and remember that feeling, because you DO tend to get bogged down in the practicalities of this appt, that appt, this therapy, that school, this TA...

Maybe I should try to remember that when new posters are asking for help. blush

Stacy, - like the new name grin

MerryCouthyMows Wed 06-Mar-13 02:24:18

And I DO struggle to engage with certain posters, even though I really want to, because I AM very 'clunky' when it comes to sympathy, and tbh I am in awe of how much some posters have to deal with, and feel like I am moaning about nothing because I can see in a second that the difficulties my DC's face are just not on the same page as what they are dealing with.

I feel like I have nothing useful to offer those posters - as I am a 'solutions' based type of person, and there sometimes just ISN'T a solution, it's not that I'm ignoring them, as much as I feel useless as in my OWN eyes, I can't help them because I don't have a solution to offer.

They MAY only be looking to let off steam, and get out their frustrations - but I've always been crap at that kind of thing!

Even in RL, if someone wants a Whinge, they don't usually go to me. They come to me if they want practical solutions to their problems.

I get frustrated because I feel that, as a regular poster, I get accused of being 'cliquey', when in reality, I'm just crap at sympathy and fluffiness.

I don't dress it up, I readily admit that that sort of thing isn't my strength, but for some people, that isn't hood enough - if you don't engage with them, you are being 'cliquey', if you do, and you are too blunt or practical (which is me all over, in RL too!), then you are told you are driving people away.

I think something that also needs to be remembered is that even those of us who have been treading this road for years, and may SEEM like we cope really well, and can give good practical advice etc. might actually be feeling VERY sensitive and wobbly too, even if it doesn't always show.

There are people on MNSN who gave said that they think I can cope really well with everything. If they saw me in tears in the kitchen at least twice a week, because I feel like I can't go on and it's too much for any one human to deal with.

Yes, I kick myself up the arse and carry on an hour or two later - because I have to - but it doesn't mean that I don't have times where I feel just as vulnerable as the newest poster on here just starting along the SN road IYSWIM.

I don't treat anyone any differently, I just don't have any relevant solutions for some posters. They are far more knowledgable than me, and it would be a 'teaching your granny to suck eggs' kind of thing.

justaboutchilledout Wed 06-Mar-13 06:06:11

Only just seen this - different time zone - but I really, really don't get it.

I get that there are different ways to respond to SN - particularly as regards the approaches for ASD - and the board can be very fervent about this - but it's not a hotbutton issue at the moment, it seems a very sensible and moderate time.

I genuinely DON'T get that there are a cliquey group of posters who sneer at everyone else.

I don't post much on the massive stuff that we are going through as a family - but that's because TBH it's all so depressing to think about - and at the moment I find it easier to detach than to share online. But I know if I did post it would be supportively handled.

lougle Wed 06-Mar-13 07:01:22

Justa, I'm so glad life is for you out in nz, but I so wish nz was in the same time zone!

Thank you to everyone who has shared how they feel.

Sallybear, it must be tough to have life changing decision to make. I talways find your posts quite inspirational.

Dev, I'm glad that you are getting good results. If you feel able, I'd love to hear some nuggets of wisdom you pick up!

Merry, you're so right. I am also known for being straight speaking in RL, not to be confused with uncaring, but I tend to have very clear thinking process, not woolly fluffy bunnies.

Good to see you back, amberleaf.

Dev9aug Wed 06-Mar-13 07:53:21

Something I learned last night, do not scare the bejesus out of a 15month old baby with very obvious sensory issues just before his bedtime, he will thank you by screaming at the top of his lungs all night..confusedgrin

lougle I would love to tell you all about it, but it will be like teaching granny to suck eggs. smile Seriously though, even though we have been doing ABA for over a year, we found the biggest difference was when we truly started using a multidisciplinary approach. A decent SALT and an OT helped us understand ds1 more so we were able to build on that. Diet helped massively with everything as well and now we think we have found a decent ABA provider, we think finally we will be able to see his true potential and get somewhere. Anything else in particular you need to know, just ask away, I will happily tell you all I know.

SallyBear Wed 06-Mar-13 08:12:17

Dev9 - I know that the chiropractor approach has helped DS4, did it make any difference to your DS1? We still go every quarter, and I know when he is ready as his old sleep and BM patterns make an unwelcome return after 10 weeks. confused I still think it works though.

AmberLeaf Wed 06-Mar-13 08:55:18

Thanks lougle smile

lougle Wed 06-Mar-13 09:12:29

I don't mind being told things I already know, tbh, Dev...there's always something new you can learn, or something that you hadn't considered. It's a bit like when I'm looking at the SEN CoP - a new poster's specific situation makes you read it in a new light, see emphasis that can be placed differently, nuances that are so easy to overlook.

We have such powerful resources, if we use them to their best potential.

MerryCouthyMows Wed 06-Mar-13 09:30:39

I'm going to try to be less blunt, and try to remember how I felt in the early days. I guess it got kind of lost in the everyday trudge!

FeelsSad Wed 06-Mar-13 09:32:11

Sometimes too people will share little details that might seem irrelevant but these will be like lightbulb moment for someone else.
Someone posted about their AS dc having a low sensitivity as opposed to be hyper sensitive. I had never thought about ds not complaining about a tooth with an abscess being anything else than god send (he refused to have the tooth extracted at the dentist so had to wait a long time to get sedation etc ...). But this was a key point when we was Camhs for the go ahead for the assessment.

EllenJaneisstillnotmyname Wed 06-Mar-13 09:33:46

Don't you think some of us not me, oh no are possibly a leetle bit on the spectrum ourselves, and that affects how we post? Perhaps a bit more bluntly and forthrightly than average?

AmberLeaf Wed 06-Mar-13 09:37:54

Yes EllenJane, I would definitely agree that that is a possibility. not me, oh no

EllenJaneisstillnotmyname Wed 06-Mar-13 09:40:57

FeelsSad, it took me ages to realise that my DS2 had quite significant sensory issues and they were 95% hyposensitive. I just couldn't recognise him or his behaviour in all the hypersensitive examples I'd been given.

Nowadays I don't know where some of the phrases I use or the knowledge I have, comes from. Was it pre MNSN, did I say that first? Or was it Ineed, coff33, Star or Attila? I'd certainly never heard of ABA, but had used PECs with my DS very successfully in a very ABA manner. confused

Galena Wed 06-Mar-13 09:43:01

I have certainly never felt that there is a clique-thing going on. Yes, there are a core number of posters who obviously know each other well. Yes, if one of that core posts they tend to get more responses than if someone outside the core posts. However, whenever I have posted, whatever I have posted about, someone will read, reply, offer support, offer advice, or even just say 'That must be hard, but I'm afraid I don't have any suggestions.'

I know I cannot offer much help/support with ASD matters. I have no experience. I also know that what DD faces daily, whilst to her and to us it is a big, life-changing matter, to a lot of you it is relatively minor. However, I have never been made to feel that we don't have a place here. You all celebrate her progress if I share it, you may feel very envy at times with our provision and so on, but you never make me feel bad about it.

Thank you all for being you! thanks

silverfrog Wed 06-Mar-13 10:14:38

blimey, this has really moved on since I jumped ship for an early night (just as well - ds was up partying again!)

I'll have a catch up as I feed him his second breakfast, hang on...

bochead Wed 06-Mar-13 10:17:46

Not just ASD traits, some posters are fully diagnosed with ASD, or other neurological disorders and many more of us perhaps should have been as kids if you include the full gamut from dyslexia upwards. Ellen makes a very valid point.

I'd have chased harder for DS to be "labelled" dyspraxic? + SPD? + APD? + dyslexic if there was any meaningful support pathway for that locally. He's borderline on one aspect of the triad, but impacted in other ways too. I initially looked into auditory processing disorder, but while it's now mentioned in DS's statement that he has obvious problems in this area when I asked the local HCP about it and tried to get a referral to GOSH, I was laughed out of town.

Only my local ASD professionals seem to have the knowledge help me in any meaningful way - everyone else just patronised me & denied that there was anything wrong with the bolting child making animal noises all day, every day for years on end. I actually couldn't give a fook about the label, so long as he gets access to the right support.

I suspect many others at the borderline end of the spectrum have found similar and that this may impact the "slant" of the board sometimes, and make it seem rather more biased towards one thing than perhaps it should be? I stuggle with terminology a lot sometimes as I have two adult cousins (2nd & 3rd) at the severe non-verbal end of the spectrum & know that their immediate family faced rather different daily challenges to mine iykwim.

I've formally asked ASD outreach to take control of the emotional skills training DS needs on an ongoing basis. I just don't have the ability to do it myself as much as I really, really want to. In my case the "fluff" gene seems to be totally missing, and I can drive HCP's crazy at times because of it! I think it led to many of the negative perceptions towards my general parenting skills from professionals when I initially sought help as I didn't waffle on & on about my feelings to them, or even recognise that this was what they wanted me to do! Perception is everything in some quarters, the Queen is admired for her stiff upper lip approach, a Mum seeking help isn't.

I'm not going to apologise for not being able to do the emotional support type posts for others here on this board when I'm feeling so guilty at lacking the capacity to help my sprog in this area. I'd rather spend my energies on reading those posts by those who are good at that sort of thing and learning as much from them as I can. (I do get wel jel wink).

Given my own vulnerabilities it just seems a healthier approach to take.

Can't we all just appreciate one another's strengths?

TICKLETUMBLE Wed 06-Mar-13 10:34:03

Maybe, if you really need one or the other kind of response then start the thread title with 'just offloading' if you want recognition and a few honks, and 'need advice' if you want more practical solutions than sympathy.

Personally I am happy with eirther kind of response. For the few that just say, 'yep feeling for you, that is typical and we see it all the time' I usually also get a few, '..and this is what you can try to make it better for you all'. And that is just perfect.

..and the odd joke never goes amiss

lougle Wed 06-Mar-13 10:39:14

I think that when criticising other posters responses, it's also worth bearing in mind that at least they do respond.

This section relies on people giving support as well as asking for it. If we all just posted when we felt rubbish and didn't respond to other people who posted when they felt rubbish, there would be no 'MNSN' board.

If posters who don't feel they can post about their circumstances wanted to, they could at least be a support for other people who do feel they can post, instead of telling those of us who do spend time and effort replying to threads that we aren't doing a good enough job.

zzzzz Wed 06-Mar-13 10:44:38

Do we all really have to like each other all the time? hmm

Do we have to like every point of view? Stance? Opinion?

Surely if you want the board to be different, it is incumbent on you o do more than say so.

"Be the change you want to see in the world" Gandhi

DisAstrophe Wed 06-Mar-13 10:44:40

wow just read the whole thread .

I'm more of a lurker and a frequent name-changer as I sometimes give details that could out me in real life.

but I think this board is Absolutely Fucking Amazing.

I've learnt so much about my dc's conditions and about other conditions that I'd never heard of

I've let off steam - sometimes just by reading somebody else's rant and silently empathising.

I've been left aghast by the lack of support some families get

I've been confused and worried by some people's situations and seen how other posters tactfully (mainly!!) try to steer them onto a potentially more productive path

I've been blown away by the lengths some people go to help their child and by the fantastic progress their kids sometimes make as a result

the only negative thing I feel about the board is that through no fault of the posters it does make me feel guilty and rubbish because I don't do half the things some parents do to help their kids.

I've adopted "a marathon" rather than "a sprint" approach. But I also know in my heart that I could be running that marathon a lot faster rather than ambling along stopping off for snacks and little lie-downs all the time.

TheBotrinator Wed 06-Mar-13 11:04:49

I am a lurker who has namechanged (couldn't remember email address linked to last name so got locked out for a while and now back to lurking) When DS first was referred for his global delay I posted a bit on this board, and some very very kind posters, enabled me through a very very bleak period where I felt completely alone in RL. Here was an amazing space where people understood every minuscule emotion I was feeling. I also got some tremendous practical advice that wasn't asked for but was offered up and has been a godsend.

I have felt so bad at not being able, to return that amazing kindness that I have felt quite awkward at times continuing to post. I am not a massive shrinking violet in RL but I do get quite humbled by people's generosity of spirit, time and experience, that I sometimes feel a bit overwhelmed that it is coming via an online faceless forum. I have struggled to work out how you manage this relationship!

I know that may no make sense but I am trying to explain how I have found the board as a newbie. I think it is an extraordinary place of knowledge, real and diverse experience that I feel guilty posting to get help or advice if I am not prepared or able to invest enough time returning that generous spirit that it kind of puts me off continuing to jump in. I don't want to be selfish and this board does feel like a great group of mates / community that I don't want to be that one that just pitches up when she wants something IYKWIM. I wouldn't act like that in RL and I don't want to act like that here. Everyone is too giving to be treated like that.

Bonkers train of thought I know, and my issue, but it's just how I have been. So basically, you are all to nice!

Apologies if I disappear now, have to take DS to physio.

TheBotrinator Wed 06-Mar-13 11:06:04

*too

bochead Wed 06-Mar-13 11:08:48

I think that when criticising other posters responses, it's also worth bearing in mind that at least they do respond

This sums it up for me. It seems incredibly mean spirited to complain when someone has taken the time out of their day to respond - noone has to.

For me, it's the full range of approaches from practical solutions to individual posting styles that gives this board so much value overall. We have people from all walks of life from teen Mums with babies to children's professionals, covering the whole of the UK (and several other nations besides). Where else can you get access to that breadth of opinion and knowledge, especially given the social isolation some people experience in RL?

The sheer diversity of responses & perspectives is exactly what makes this board so darn useful!!!!

AmberLeaf Wed 06-Mar-13 11:08:54

I've adopted "a marathon" rather than "a sprint" approach. But I also know in my heart that I could be running that marathon a lot faster rather than ambling along stopping off for snacks and little lie-downs all the time

I can relate to that DisAstrophe.

Also the guilt in some ways.

I think Im doing my best in most aspects, but I always wonder if I should do more.

Ive had periods of time where all I did was research what to do and how etc, but I think I got overly obsessive about it [not suggesting anyone who does the same is, just saying how it felt for me] and I don't think it was helping me or my son.

I feel now that Ive found a way of being that works for me, my son and my other children too.

I think everyone has their own way of dealing with things and on the whole there is no right or wrong, just different.

EllenJaneisstillnotmyname Wed 06-Mar-13 11:19:34

But, hopefully, we do understand that not everyone has the capacity or desire to spend every spare moment blush on MNSN! I am happy to offer whatever support I can to anyone, old or new or NCer. Obviously I like to bump into 'mates' occasionally and have a chat, that's part of MNSN for me as well.

I'm naturally rather chatty, though, and you have to be confident in yourself to offer up advice. I just pitched straight in as soon as I found MN, I never lurked. But that's down to personality. So, I guess that most of the 'regular' contributors are confident in themselves and want to share it. That probably makes us a particular 'sort' of person. Or maybe we are just confident on an anonymous forum? grin rather than in RL!

DisAstrophe Wed 06-Mar-13 11:22:38

Thanks Amberleaf

I've done lots of research - its what I do for a living so comes naturally to me. I'm much more of a thinker and a talker than a do-er! grin

My dc are well-loved and well-cared for - the type of upbringing that would be more than good enough if there was no SN. I have no feelings of similar guilt about my younger nt child.

But dc is now in a good school and has good professional involvement - with help of what I learnt on this board.

AmberLeaf Wed 06-Mar-13 11:27:17

I'm much more of a thinker and a talker than a do-er!

Oh god, me too!

If only I could get motivated Id change the world!

EllenJaneisstillnotmyname Wed 06-Mar-13 11:29:42

Please do remember that a lot of the advice is what you 'should' do, not necessarily what we do do! Do as I say, not do as I do. grin

DisAstrophe Wed 06-Mar-13 11:31:57

Amberleaf - I often think the same!

silverfrog Wed 06-Mar-13 11:57:05

ok, have read it all, and promptly forgotten a lot blush

thank you to everyone who posted - nice to 'see' a few people who aren't usually over here <waves to Amber and MAryz> and to meet a few more who I had no idea posted over here either <too many to mention, but hello!>

It has been really interesting to see different takes on how/why the SN runs. and to see what people want from it.

I don't have any answers - I can barely run my own life at the moment <need matchsticks to prop eyes emoticon>, and I am not around supporting as much as I used to be. That makes me feel bad as I am sure I am going to be in need of advice over the next few months with dd2.

wrt feeling as though problems are not as big as others' - please don't anyone feel this way. I've posted about some seriously trivial stuff over the years, which was important to me at the time. just recently I was once more asking if anyone knew how to teach music to severely disabled children - that's hardly at-the-coalface, daily slog stuff is it? wanting to know how to help dd1 harmonise/play along to her favourite songs grin

but it is important to her, and therefore to me.

many others have said it - it is the breadth and depth of expertise which makes this place so good. we don't (and can't) have all the answers, but usually there are a good few suggestions to try, and the shift of perspective can be refreshing too - I know I've asked one thign, but ended up taking away a very different answer (or the answer to a very different problem!) more than once.

merlincat Wed 06-Mar-13 12:41:33

My experience is that my own perspective is not terribly relevant to most of the posters on here. My Dd is 17 now, I'm no longer terrified as to what she may become, or fail to become, as the reality is now staring me in the face.

What I do know is that there is quite literally no-one in rl (and I do have quite a few mates) with whom I can share my kittens successes or failures. I hope it doesn't feel irrelevant to you all as most of you are in the thick of it and struggling with dx and so on, but it means a lot to me (and her) to feel that we are not just fumbling around in the dark and that someone will listen.

TheBot please don't feel like you can't keep asking. Some of us share our experiences in a kind of therapy way, and share our research and knowledge because we're just so damn angry at how we've been treated we want others to have the tools to challenge too as well as avoid pitfalls. It makes the fact that we've given up so much of our lives to google a little bit more bearable.

So ask away....

lougle Wed 06-Mar-13 12:44:40

merlincat I'd love to hear your DD's successes and commiserate on her failures. It's that kind of reality that we all need here. I shared this week that DD2 brought home her first ever 'creation' that another child had made for her. It was epic stuff - like a flare going off in the night sky.

Tell us...start a thread - I dare you grin

lougle Wed 06-Mar-13 12:47:06

Thebotrinator I look back at my early posts and I really knew nothing at all. This whole issue isn't 'what do you have to offer', it's 'be part of life here, or don't, but don't refuse to be part of it and then point it out'.

Lurk, post, even a grin or sad on it's own can actually make people realise that someone has read their post - that's huge when you feel so isolated.

SallyBear Wed 06-Mar-13 12:47:38

DD was born 13 years ago with her difficulties, we have adapted life to suit her and to help her. Making hard decisions along the way, knowing that there are still yet more hard decisions to make. Remembering that she is also a 13 year old girl and has the whole of her life ahead of her. Wanting the best for her but also wanting her to be confident in her skin and with the choices that she makes in life.

We are well past the dx stage with her! It's just trying to remember that "the best is yet to come!"

merlincat Wed 06-Mar-13 12:51:21

Alright then...Dd is performing in a recital this weekend, (she's playing Satie and Handel dontcha know) and, in the audience,along with her faithful parents , she's invited a boy grin

SallyBear Wed 06-Mar-13 12:54:14

Yahoooo!

silverfrog Wed 06-Mar-13 12:56:03

that made me grin, merlincat.

I love to read your threads abut your dd's successes - in fact, I love any success thread

<off to hunt out lougle's thread now>

frizzcat Wed 06-Mar-13 12:59:02

I posted earlier in this conversation and I've watched it in my stalker way since - I'm glad to see others here feel as I do that I don't know enough to respond or conversations have moved on etc, etc - but I think it is to do with our own confidence/vulnerability and not in fact the board.... So after this I'm off to post about the Theraputic listening program which I'm just about to complete with ds - if it helps anyone then good! If not, no harm done. It was one of the people on this board who helped me understand this and get the best from my local OT.

Re: how people respond to my posts/contributions I want all the kinds of responses, the empathy, the laughs, the facts, strategies, the kick up the arse - keep it coming, I need all of it!

Ellen - I'm not spectruming, or even slightly unhinged its the rest of the world grin

MerryCouthyMows Wed 06-Mar-13 13:06:18

Merlincat - your perspective IS important to posters like me, around two years behind you in the process (thank you MaryZ, I DO think you are right there!).

My DD is 15 in a couple of days, and I am starting to panic about post-16 stuff, as she is 'only' on SA+, as Essex have refused to even ASSESS for a statement despite numerous attempts from me since she was 3yo.

She is going to fall into a no-man's land when she finishes Y10 - too able for the life skills courses at college, not able enough to get the 3 'C' grades required to do the one college course she might be able to have any skill at.

She is also in the first year group that HAS to stay till 18 - so any advice from people with DC's with SN's aged 16+ would be very helpful to me!

So don't think that just because your DC's are older that there isn't anyone here needing their help - I struggle to post in teens because some of the replies are quite harsh, and don't take into account DD's SN's, and tbh, I'm a bit too sensitive right now to cope with that - I've been avoiding AIBU as much as possible lately too, which is unlike me!

And the SN teens section doesn't get much traffic, and often I'm looking for quick responses.

Please don't think that your experiences aren't relevant for people on MNSN - there's always someone you might be able to help!

blush

[Shamelessly asking for help emoticon]

ouryve Wed 06-Mar-13 13:07:23

DisAstrophe - I'm taking the marathon approach, too. Between the two boys and my own emerging health issues and frequent spoonlessness, I have no choice.

I'm hoping to get DS1 settled in a new school for September - later in the academic year if the timing doesn't work out. I just realised, yesterday, that DS2's DLA is up for renewal early next year. There's a chance that DS2's mainstream provision will no longer be enough for him by the time he's the same age as DS1 is now and that will probably coincide with DS1's DLA needing renewal. This is all assuming that DS1's new placement really works for him and we don't have to look elsewhere for secondary provision....

And then, of course, we all have that matter of ordinary real life that everyone has to deal with. (like needing a lens changing in my super duper varifocals, so apologies if I've missed any awful typos)

lougle Wed 06-Mar-13 13:11:46

See, merlincat a perfectly wonderful story that we can all share, now grin

What lovely news. I dream of my DD1 being able to have fingers that work enough for music. She melts when she hears music and her face just softens.

merlincat Wed 06-Mar-13 13:17:37

I'd be delighted to help Merry (the challenges that you face, and cope with, are absolutely extraordinary btw). The thought that kept me sane through GCSEs was that there is no One Chance to surmount these hurdles. If she's not mature enough by yr 10 could you defer? The six-form college that my Dd goes to has quite a few teens doing just that.

AmberLeaf Wed 06-Mar-13 13:27:32

<Waves back at Silverfrog> smile

Merlincat, Id always be interested to hear about your DDs triumphs, I think performing in a recital is an achievement for any child, but I know how much of a big thing it is when that child has SNs.

I bet that will be a tearjerker!

hazeyjane Wed 06-Mar-13 14:00:22

It has been so lovely reading this thread, to hear what mnsn boards means to people. I think it would be great if the sn teens section were to merge with the children's, but has that been proposed in the past and rejected?

I was talking to ds's portage worker today about a new professional who is involved in ds's care (she of a particularly great caring carrot in the last couple of weeks) and I said that I didn't feel she was going to be of any benefit to ds, and that I would call her manager and ask for her not to come any more. She pointed out how much more confident I have become since she first met me, and how much more focused. I really do think that one of the main reasons for that is having the network of people on here. Whenever I have started to fray at the seams and fall apart, someone on here offers a hug, or a honk or practical advice or even a phone call telling me to focus (in the nicest friendliest way!)

Just to say as well, that when ds has been in hospital, I would have gone mad if it hadn't been for posting on here.

silverfrog Wed 06-Mar-13 14:08:29

It all used to be one section, hazey, but then teens was separated out mostly due to some posters feeling unable to post in SN children. It is a shame teens doesn't get much traffic though.

DisAstrophe Wed 06-Mar-13 14:12:22

waves at ouyve as she bounds past me on her marathon run.

I too like hearing about the older children/young adults. I'm now finally past the main dx stage (dc is 7 and I'm been posting/lurking for nearly 4 years).

I also have a sister with DS who is in her 30s so I know a bit about services and provision for adults but always happy to learn more. I have agreed with my parents to be her advocate when they are no longer able to do so - she is very articulate about what she wants so may not need my services too much!! grin

troutsprout Wed 06-Mar-13 14:19:17

merrycouthymows
Ds (15 yr 11) is just starting the post 16 process. No statement just individual pupil funding (15 hours) . Hfa/ dyspraxia.
We had a meeting with a Sn support worker from the college he will be going to ( next door to his school) , the senco and someone from the youth support service ( I think this used to be called connexions). They filled in a learning plan document ( it was called s139a -I found that out from someone on here ... Thank you !) which outlines the needs of learners making the transition to a new area of education. We had to sign and ok this and it then goes with him where he goes in preparation for entry.
Ds now visits the college every other Thursday with the youth support personal advisor . He has had 2 visits so far. He's l
We are waiting on a formal interview when they will discuss the sorts of support he will be getting, but they have said that there will be support in place.
So we aren't sorted yet ... I go through fits and spurts with it... i need a kick up the arse atm to arrange another meeting with college to make sure it's all in hand ...But it's looking ok so far. << crosses fingers>>

ouryve Wed 06-Mar-13 14:28:15

We're probably at a similar stage, DisAstrophe - my boys are 9 and almost 7. DS1 has been tigger since before he was even born!

MerryCouthyMows Wed 06-Mar-13 14:42:39

Ooh, thanks for that, trout sprout! <<Files form number away for future use...>>

PolterGoose Wed 06-Mar-13 17:00:17

Something I dislike on this board and all across MN is using a post title to call out to specific named MNers, in a "fatcat, armchair, remotecontrol,* help me!" sort of way. If you want to ask for specific people to respond it is much more polite to use PMs.

*hypothetical usernames inspired by immediate surroundings

zzzzz Wed 06-Mar-13 17:02:24

merlin I love hearing about kitten.

Except I have a bit of a thing about not responding to PMs because I once nearly drowned in them. Also, I'm just an opinionated MNer. It's pretty dangerous for anyone to only have my opinion. Far better their issue be the subject of a discussion with different perspectives.

Also, even if the issue has a straightforward answer, it reaches more people on the board. Lurkers don't have access to PMs.

Having said that I dislike the naming of posters in titles too, as that kinds of puts pressure on the person to respond and those not named who know the answer feel like an intruder if they contribute.

Lol. I guess I'm just a right ole misery guts!!!

zzzzz Wed 06-Mar-13 17:20:29

I'm still laughing about fatcat, armchair, and remote control

"Well built" not fat, and you are it wrong about the names in threads.

merlincat Wed 06-Mar-13 18:15:05

zzzzz, you know I've always had a major thing for you. (slightly sinister emoticon).

Maryz Wed 06-Mar-13 18:30:32

I'm wondering whether a thread in teenagers for parents of children with SN might be the way to go? An ongoing thread.

I've been amazed how the thread I started there for parents of really difficult teens has taken off. I thought I was alone, I now realise that there are at least 20 of us really struggling, with more coming along every day.

If a thread was started there for people like Couthy and others, whose children are at mainstream but struggling with extra issues like ASD, dyslexia, ADHD - things which make life difficult as a teen. The Connexions thing that Trout mentions sounds fantastic - much better than here where they just get chucked out and left to sink. Such a thread might attract a lot of people who otherwise wouldn't know where to post. It would give everyone a place to congregate.

And you could start it with a warning, like I started mine: I said that it was a support thread and that people weren't to arrive and say things like "I wouldn't put up with that" and "cannabis is just a bit of fun". Interestingly they haven't come along, whereas whenever i posted in the past about ds on other threads in teenagers I got a whole lot of parents of toddlers telling me that their children would never do whatever ...

SallyBear Wed 06-Mar-13 18:41:55

Maryz. Now I have 13yr old twins I will watch your thread and mark my place. We have issues obviously but they're never insurmountable - so far.....! I am sure once they're truly teenagers I will be wishing they were still small and helpless!

lougle Wed 06-Mar-13 18:50:02

Maryz, that might be a good idea, however if I remember correctly, the reason that some posters didn't want such a section, thread, subsection, etc., within SN was that they didn't want the rest of 'us' who didn't have direct experience being able to read, or comment on, those threads.

In a forum, you can't exercise that level of control over posting activity.

Unfortunately, that meant that those posters who expressed those views felt that there was no 'home' for people like them.

I'm not sure the 'location' will change that.

Maryz Wed 06-Mar-13 19:34:32

No, no Sally, you really don't want to watch my thread.

The main reason I stopped posting in SN was that I didn't want to scare the pants off anyone. Sadly, ds's problems increased massively once he left the relative protection of primary school. But it isn't like that for anyone.

The reason I suggested such a thread in Teenagers rather than here is that many people who have a child with "just AS" or "just ADHD" but who is high-spectrum and managing well will feel a bit uncomfortable posting here where there are people whose problems are so much greater. Whereas they might have useful information to post that could be of great benefit to the many children who fall between two stools - their needs aren't so great that they go to a special school, but neither are they able to manage easily in mainstream.

I think for people whose children have profound needs, teenagers probably isn't the place for them as it can be very discouraging to see other parents moaning about problems they would love to have, iyswim [diplomatic]. But having a SN thread in teenagers might overcome the pompous "you reap what you sow" judgemental posters who pop up when we admit to having kids who are struggling.

And yes, that might well leave some people out - for example those whose children don't go to mainstream. But it might help many others.

ds2 has ADHD, for example. But I wouldn't post about him in SN, I'm much more likely to post in Teens, but dread the "why doesn't he just behave" posts hmm.

lougle, wasn't OTBT set up for people who wanted to post to a select few? I don't understand why people who don't like it here much don't start a thread there? Or isn't that acceptable? Or maybe there is one - I respect the privacy so wouldn't post on a OTBT thread uninvited.

WilsonFrickett Wed 06-Mar-13 20:32:13

Great heavens! Take a couple of days off and you'll miss a couple of posts, eh? grin

My perspective:
Harking back to 'the good old days' is daft. We have the posters we have, here and now. It's an internet forum, it has to be fluid.

It is very 'ASD heavy' however I think it's important to realise why that is - it is one of the best sources of information I have found anywhere about ASD-type things. So when people google stuff they end up here, and they tend to stay here, so like attracts like. I have tried recently to pop up in threads on other issues but as it's not my area of knowledge I tend to feel a bit useless.

I do think it's important to recognise posters' fragility, esp at the beginning of the process. However, it's also important to respect the body of knowledge. When we have a poster saying 'hmm, the doctor has said wait and see, I'm sure it will be fine that ds is doing x, y and z' surely as someone who has been through that process you feel you have to say, 'well yes, or it may not be fine and meanwhile here's some things you can do?' Treat your child as if you already had a dx is the single biggest gift someone could have given me at the start of his dx process. We wouldn't have wasted 2 years then sad. I personally will pass that gift on to everyone I 'meet' - if they choose not to accept it that's fine, but I will try to give it.

I would like to hear more from parents of older children too, because I think there's lots we can learn and they need their hands held too.

But essentially, for me, this is a forum on the internet. Incredibly useful, yes, but I just don't get the navel-gazing, maybe that's just me though?

PlentyOfFreeTime Wed 06-Mar-13 20:35:10

Long-standing nc’d poster here (Wet for those who may remember).

I don’t post on here very often now. Neither do my pals Vic and Goblin.

I notice more posts these days that receive no answer at all. When I used to post on here regularly I always made a point of answering any unanswered posts – even if it was just to bump them.

On any forum there will always be the dissatisfied and the flouncers. MN SN has always suffered from this. A few years ago it was usually the usual suspects and often as a result of an argument that had kicked of elsewhere (Facebook). I used to read the thread and think – FFS, get a life!

We will always have flouncers and TBH I just ignore them because they are usually just venting and will be back within a few weeks anyway.

It does rile me when folk start bitching about little support they have received. Some poster’s expectations are way too high! People have to realise that we’re a group of mothers with DCs who have SNs who are volunteering to answer posts – we’re not IPSEA, we’re not Ofsted, we can’t predict the future, we can’t make everything better with the wave of a wand, we can’t issue Statements and we can’t give much practical support over the Ethernet. Posters who are disappointed are usually those with strong emotional needs which his forum cannot support. Those who need tactical / strategic advice usually go away satisfied.

At least we’ve stopped invading every post in every non-SN forum. That used to make me very angry and no doubt made us very unpopular. I resented the way that some people had to put the SN slant on every single post ‘upstairs’. Yes, the SN slant is needed but not in terms of Monty Python’s 2 Yorkshiremen! And once they’d been lynched by the terminally thick ‘upstaurs’ they’d come back down here to complain that the big boys were rough and that they felt like flouncing over it. FFS! Learn! Stop engaging with morons.

I don’t like Holland and I don’t like honking. Honking is something that could make a new poster feel very excluded – better to save honking and caring carrots for the Friday night thread. I like to hear the positive endings – the Statements that have now been issued, the Tribunals that have been won.

One reason I don’t often visit the SN board is bloody PDA!. It’s PDA this, PDA that. Example: OP query – are these behaviours indicative of ASD? Answer – Have you considered PDA? Why the fuck bring PDA into it. In my opinion, it’s a dx that until recently was limited to a small geographical area where one particular paed identified this possibility (I can’t bring myself to call it a condition), it’s not in the DSM IV or ICD and it’s validity was even questioned by the NAS in the dim and distant. After years of being around young people with Aspergers I can tell you that a lot of their behaviour is demand avoiding too! But new posters read about PDA and then get very disappointed that their local professionals have never heard of the bloody thing!

I’m looking forward to the change in SN law for no other reason that that’s when I shall stop posting on here, as my knowledge will be out of date then. Until then I still feel obliged to answer the poor sod that everyone else has ignored all day.

Have probably upset a few folk but that’s my honest feelings.

HotheadPaisan Wed 06-Mar-13 20:53:33

PDA strategies are good whether it's that or not.

HotheadPaisan Wed 06-Mar-13 20:56:41

Or rather they are worth considering if other approaches are failing.

lougle Wed 06-Mar-13 20:57:42

Maryz, OTBT was given to combat the fact that MN is searchable, IIRC. So those threads don't show up on google, but you can see them freely from within MN. The posters I refer to had issue (paraphrasing) with people who did not have late teens/young adults with SN viewing and commenting on their threads, including those of us with younger children with SN.

PlentyofFreeTime - welcome back. I think PDA is being more widely recognised across the country <cryptic>. I know what you mean though, because I started a thread last week asking 'why the shift'.

HotheadPaisan Wed 06-Mar-13 20:59:30

And it is really out of order questioning it as a condition, I'm quite shocked and annoyed by that.

lougle Wed 06-Mar-13 21:06:26
TheNebulousBoojum Wed 06-Mar-13 21:10:27

'I don’t post on here very often now. Neither do my pals Vic and Goblin.'

Ahem. I still have my bucket, I seem to remember you prefer red? grin

WilsonFrickett Wed 06-Mar-13 21:14:23

But new posters read about PDA and then get very disappointed that their local professionals have never heard of the bloody thing!

Many, many HCPs in Scotland haven't heard of ABA (or pretend they haven't). When I first looked into it I found that it had only been funded once in the entire country. Once! But I heard about it here, looked into it here, found a consultant here and went ahead with it. Using the argument that HCPs haven't heard of things - I dunno. I just know DS wouldn't have made as much progress without something that the HCPs hadn't heard of.

Maryz Wed 06-Mar-13 21:25:03

I think PDA is a series of symptoms than can appear by itself or with others.

I find it hard to think in terms of PDA because it is so variable. But then again, so is ASD - there are no two children with Asperger's for instance who are exactly the same.

ds with AS would fit a lot of the symptoms of PDA, as would ds2 who has ADHD (only very recently diagnosed). When diagnosing ds2 they concentrated a lot on whether or not he showed signs of Oppositional Defiant Disorder (which he doesn't really, just Teenage Defiant Disorder grin) which also overlaps with PDA, I think?

ds1 would have shown a lot of signs of PDA, but it was never considered - I suspect it wasn't a "recognised condition" at that stage.

But I'm not entirely sure it matters what the diagnosis is. The reason we need a diagnosis for our kids isn't to excuse or even explain their behaviour, it is to access help especially in school. I think it's a pity that kids need a "syndrome" to get help. Life would be much easier all around if children who needed help just got it. But of course that's the utopia.

Maryz Wed 06-Mar-13 21:27:18

And going back to the non-supportive hmm nature of the board - I think Facebook is a disaster for mumsnet. I spend half my time not knowing who has fallen out with who because of some off-board spat that I've missed.

It's very confusing grin.

lougle, I think I probably didn't get into trouble because I avoided those threads.

lougle Wed 06-Mar-13 21:33:43
zzzzz Wed 06-Mar-13 21:40:32

One little parents evening and the threads run away with itself!

Have read, but all I can retain is merlin can't do sinister grin , but thank you blush

PDA is exactly how ds behaved when school went tits up. To me this is more ASDish than he has ever been, but I'm in it for the strategies not the label, so no matter.

bialystockandbloom Wed 06-Mar-13 21:41:16

Well, whatever else, it is very nice to see some old posters here.

Wet I have often wondered where you were - you along with two others in particular, were more help to me than you will ever know a couple of years ago with statementing crap.

One of the best things about this board for me is having the insight, experience and wisdom of folks with dc older than mine. It is obv me being selfish but I look out for and lurk on threads of this kind even if I don't post. Someone said earlier they were hesitant about posting as they didn't want to 'scare' people with visions of the future, but god, that's one of the most useful things for me.

Amber are you the same Amber of yesteryear (prev Amber2000)?? If so, are you ok? And if not, sorry! blush

And finally: wot everyone else said.

wine

PlentyOfFreeTime Wed 06-Mar-13 21:42:43

It didn't achieve the goal though - it's still not in the ICD or DSM.

Also interesting to note that 6 of the 10 references used to support the paper are by E Newson - the author of the paper.

DS (Aspie) spends half his life avoiding demands but I would never accept a diagnosis of PDA which, in my opinion, sends out allthe wrong messages about the child - even the name is vile.

AmberLeaf Wed 06-Mar-13 21:44:05

bialy No, Ive always been me! grin

I know there is/was an Amberlight around here, Im not her either!

NoHaudinMaWheest Wed 06-Mar-13 21:45:52

Late in the day but I will add my twopence worth. I found this board almost by accident about 18mths ago. I was feeling very isolated by the combination of Ds's SNs and my own health issues. It was fantastic to find somewhere where my experiences were the norm not weird.

Ds's combination of problems is a bit unusual and he at 16 is older than most. I have however found help with some practical problems and lots of support and handholding.
I am a bit wary of posting on threads by those with younger children or at the beginning of the process. Ds was not diagnosed with ASD until he was 10 and though we went through the statementing, DLA applying, almost going to tribunal stuff it was more luck than judgement that it all worked in the end. I have found it helpful reading about younger children because it helps me understand why Ds did what he did when he was younger. I hesitate to say that Ds used to do that but doesn't anymore or has improved because I know that isn't true for everyone and I don't want it to come across as
'its just a phase, he'll grow out of it' because I know people get enough of that in real life.

There are only a few posters here who have experience of full blown OCD which is where Ds's major problems lie so I don't really ask for advice about it here now. I have good professional help on that front anyway. I know I could go to an OCD specific forum but then they would probably not get the ASD and anyway I feel comfortable here.

I think the board is for each poster what they make of it. Some people use it for specific queries and it feels to me that those are answered when other posters have the specific knowledge.

Others use it more frequently for support and advice. Obviously those using it most often get to know each other and so they engage in chat, banter and use weird code words. That can feel quite alienating for new posters (I know I thought What!!! when I first read the Friday night threads. However if any one introduces themselves as new they are always welcomed. If they stick around they become one of the regulars and before they know it are engaging in the banter too.

If you are feeling fragile or exhausted you don't need to post on or even read threads you find difficult. If you are feeling like that and want support, you only need to say so and other posters will be kind.

bialystockandbloom Wed 06-Mar-13 21:49:16

Oops sorry blush Hello anyway <waves> smile

Does anyone know what's happened to Amberlight though? Haven't seen her for a while, and thinking about her, she was going through some 'stuff' wasn't she.

AmberLeaf Wed 06-Mar-13 21:50:19

<waves> smile

bialystockandbloom Wed 06-Mar-13 21:51:07

TNB are you Goblin? shock

I am just going to start my own spreadsheet aren't I.

HotheadPaisan Wed 06-Mar-13 22:08:04

Well, that's your opinion and prerogative PlentyOfFreeTime, no need to be quite so fucking rude about it.

TheNebulousBoojum Wed 06-Mar-13 22:09:59

Yup, from long ago and far away.
I think this is my 7th incarnation, along the lines of Dr Who.

PlentyOfFreeTime Wed 06-Mar-13 22:11:46

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

justaboutchilledout Wed 06-Mar-13 22:14:11

I'm not qualified to judge on the niceties of DSM inclusion but I do know that reputable professionals who I trust have - in different continents - repeatedly referred to PDA as a "real" condition. I remember that you had very strong views on this in the past and I am sorry if it's making you keep away from the board. But I do think that this is a relevant and valid diagnosis for posters to discuss, suggest or advise each other on: the nature of the board is that cutting-edge and minority and cranky views all have their place. If you find PDA cranky, that's your prerogative, but it certainly hasn't been my experience when I have talked with reputable professionals in two countries on the subject.
(None of my children have or show symptoms of PDA BTW)

HotheadPaisan Wed 06-Mar-13 22:19:50

I think it would be an absolute disgrace if MNSN became a place where PDA is not accepted as a valid condition. I'm truly appalled you don't see a problem with what you've posted.

HotheadPaisan Wed 06-Mar-13 22:26:16

And anyway, it is an ASD, a particular presentation of ASD, not sure it matters about being in the diagnostic manual, there are many presentations and combinations of impairments comprising ASCs. One day we'll have more than the blunt diagnostic tools and woeful understanding of neurological and developmental disorders we have now.

TheNebulousBoojum Wed 06-Mar-13 22:26:21

It is one of the strengths of these boards, that different variants and shades of conditions can be discussed, and PDA is relatively new as a dx in the scheme of things. Still a recognised term though.
In the same way that some have very strong views on diet or ABA or all the different possible approaches to helping our children manage and interact with the challenges that life throws at them. Some of the ideas may seem a bit woo to me, but that's when I stay silent because if it helps someone else, then it's all good.
DS will still consider himself an Aspie when that diagnosis is replaced by whatever the professionals have decided is the next label. ASC never quite caught on in the way that was expected either.

PlentyOfFreeTime Wed 06-Mar-13 22:26:25

Look Hothead - if you want a battle please go elsewhere.

You believe in PDA - I don't.

I'm not alone. I know it's awfully bad form to quote Wiki but I think this sentence sums up my own views:

However it could be perceived that the label and training to diagnose it are being marketed by a single point of origin, whilst no corroborating scientific evidence of the condition's existence has been published from any other source.

Love the term 'marketed'.

bialystockandbloom Wed 06-Mar-13 22:27:18

TNB please put me out of my misery and tell me who you were 'twixt Goblinchild and TNB? IIRC you were someone else too and I remember quizzing you that time too grin. I know NCing shouldn't matter but for some reason I can't cope with it <pathetic>

PlentyOfFreeTime Wed 06-Mar-13 22:28:22

She was a fallen carrot.

TheNebulousBoojum Wed 06-Mar-13 22:30:51

Umm...
All the names I've annoyed people under? Are you going to assemble a mob with pitchforks and torches?
I was WofflingOn for a bit, and FallenCaryatid and....um...

TheNebulousBoojum Wed 06-Mar-13 22:32:39

There's a new phrase now, a caring carrot.
Not quite sure if it applies to me, but it seems to be a rude name for a professional waffler.

EllenJaneisstillnotmyname Wed 06-Mar-13 22:32:59

Professionallyoffended!

HotheadPaisan Wed 06-Mar-13 22:33:41

No thanks, happy to stay. I'm just surprised you feel ok about saying that to others struggling with it. I'm trying not to be bothered about that but I really am so no point pretending I'm not.

lougle Wed 06-Mar-13 22:36:25

I think the only danger with PDA is similar to that of ASD, in that some of the diagnostic indicators are actually normal features of childhood, which are extreme in presentation.

Therefore, sometimes parents can 'see' PDA in their children and consider their child 'PDA' when actually they are not.

My DD who is 3, is extremely demand-avoidant and can suddenly turn if I dare to either join in what she starts, or do something too soon, too late, too quickly, too slowly, too loudly, too quietly....it's very wearing.

I have no comparator - DD1 has SN, DD2 is ? something.....is this what NT looks like? I don't know.

I read about PDA and think 'goodness, that's DD3!' but it's very much more likely that it's DD3 being 3!

EllenJaneisstillnotmyname Wed 06-Mar-13 22:36:42

And, wet, Hothead's DS has a PDA DX and she's recommended lots of PDA type strategies to many posters who have found them very beneficial. It wasn't Hothead who said, 'bloody PDA this, and PDA that.'

bialystockandbloom Wed 06-Mar-13 22:38:34

I now realise I am coming across like a stalker blush

Ah yes, it was Wofflingon, I remember asking you about it at the time.

I will leave you alone now until the next time you nc grin

EllenJaneisstillnotmyname Wed 06-Mar-13 22:38:55

I'm maybe going to review my use of honking. I never thought if it as an exclusive code that would put posters off, because it's meaning is so supportive. But if you don't know it's meaning...

HotheadPaisan Wed 06-Mar-13 22:40:14

Also, who cares about scientific proof? I'm not especially concerned about the root causes of ASD, I care about the recognition of a set of characteristics and the formulation and dissemination of information about things that might help DS1. Why would you want to dismiss that? I just don't get it.

bialystockandbloom Wed 06-Mar-13 22:43:23

Ellen I was surprised that the honking thing would seem cliquey too, but yes now you put it like that, I can see how that could happen. Though tbh I always feel a bit awkward using it as it sounds like you're vomiting over someone.

Maryz Wed 06-Mar-13 22:43:51

Isn't it really all a continual spectrum though?

That's how I look at it - and looking at my wider family who go from (using non-technie terms) obstructive to obsessive to odd to highly intelligent to just plain weird, and intersperse that with a few actual diagnoses, I suspect the entire family is on the "most aspie end of the spectrum".

So my brother would have displayed a lot of obstructive/oppositional behaviour (as does my son, now), my cousin was a typical nutty professor, my dad is very intelligent with odd empathy and many OCD tendencies.

But I would say they were all on the Autistic Spectrum - rather than trying to label one as PDA, one as HFA, one as ODD, etc etc.

So, Hothead, I agree that it isn't a good idea to say that PDA doesn't exist, I'm wondering whether it can be a standalone diagnosis, if that makes sense. Can it, do you know, or is it always part of a series of diagnoses?

Nebulous, I knew I knew you, but I didn't know you were Goblin (though you might have told me confused), lovely to see you smile. I was wondering where the fallen carrot had gone.

AmberLeaf Wed 06-Mar-13 22:43:54

Aah I had wondered where Fallencaryatid was!

HotheadPaisan Wed 06-Mar-13 22:44:24

For sure lougle, which is why we didn't look into anything until later, by which time things had become very bad indeed, and are so again atm. Everyone we meet finds DS1 an utter enigma until they read some of the stuff around PDA and it all clicks into place, as it did for us when we first heard about it.

I never thought I'd have to justify or respond to challenges about it on here, but I suppose it's fair game, most things get challenged at some point or another.

EllenJaneisstillnotmyname Wed 06-Mar-13 22:45:27

grin bialy. And I used the wrong its twice in the same post. Good job this isn't pedants' corner!

Maryz Wed 06-Mar-13 22:48:02

Sorry, I x-posted there Hothead - I do think that the strategies used for PDA (and ODD) can be very useful when dealing with an Aspie teenager, by the way. Because it is impossible ime to distinguish at times what is ASD, what is stroppy teenager, what is depression, what may be drugs/alcohol/friend influence - all of which are behaviours that can be over-developed in teenagers with ASD.

That's why I think it's a pity a child needs a definitive diagnosis.

ds1 has "Asperger's". I think if he was assessed now he might not get a diagnosis at all (apart from druggie hmm), but he might get a diagnosis of almost any of the above, or of Attachment Disorder, which he also shows symptoms.

In Ireland, a diagnosis of ASD gets help in school. A diagnosis of anything else doesn't. So paeds go with ASD if they can.

Maryz Wed 06-Mar-13 22:48:44

<goes off to read more about PDA>

HotheadPaisan Wed 06-Mar-13 22:58:03

There's a lot of debate about it, particularly whether it fully meets the criteria of the triad or is separate neurological/ developmental disorder. I'm not sure, all I know is it is astonishingly difficult to deal with.

DS1's diagnosis is ASC (HFA) with very high levels of anxiety leading to oppositional/avoidant behaviour, also SPD, extreme separation anxiety and a sleep disorder etc. Schramm's chapter on why some children are so controlling resonates too.

It's more all other strategies not working though, and the lability of mood/ Jekyll and Hyde nature of it all, utterly exhausting. And how severe and extreme it is, school are looking at 2 to 1 for part of the day now, very difficult stuff, whatever people do or don't want to call it.

This specific collection of behaviours works as a description for me, fair enough if it doesn't for others but sit eems a bit harsh to just dismiss it.

marchduck Wed 06-Mar-13 22:58:27

I'm late to this, but just wanted to thank evryone who posts on MNSN.
I first found MNSN when I was googling a feature referred to in a very early report from her paed, which was copied to me in error. I was in shock; the first link on Google was disturbing. The second limk was to MNSN - I posted, and will never forget the kind responses.
I have great family & friends, who love DD. I have felt so alone though since her difficulties came to the fore. I was in denial in myself, but to a lesser extent than nearly everyone else round me.
MNSN was (and still is) such a help to me, especially when I couldn't talk to anyone else. I learned how things could be ok, not in the "everyhting will work out ok" sense that family said, but in the "here's what you can try to make things ok" approach from posters here.
So to everyone who posts, I hope I can convey how appreciated and significant your posts can be to a newbie reading the board. And to anyone who lurks/reads regularly and is worried about a DC, please think about posting. You are not alone.

lougle Wed 06-Mar-13 23:04:41

HotheadPaisan, I wasn't asking you to justify or challenging you, at all. I was explaining that I don't have an issue with 'PDA' as a diagnosis, at all, but as is typical of diagnoses that are 'symptom collections', what is 'extreme demand-avoidance' to one parent is 'being a bit defiant' to another, so it's a slippery slope for parents to 'diagnose' their children.

DD1's carer has said that DD3 is 'extreme' and 'I need to do something about her because she could be my biggest issue'. Her preschool say she's absolutely delightful. Who's right? time will tell, I guess.

HotheadPaisan Wed 06-Mar-13 23:04:46

I agree, there are loads of problems with the way we feel the need to diagnose and put people in boxes, it's all a load of nonsense really. But I am eternally grateful to those who recognised there was a set of children who didn't entirely fit 'traditional' ASD profiles but who all had similarities with eachother. I'm glad they wrote down what those were and published them so parents can find eachother and talk about what to do.

And everyone has their moments of being really unhappy with the name of it, but it is what it is and the problems are so bad atm that I don't really care what it's called, I just want people to recognise the neurological root of it and so something to help, and people are. Next stop consulant psychiatrist to discuss medication. DS1 is 6, that's how bad it all is.

Would you like some links?

<cackles>

HotheadPaisan Wed 06-Mar-13 23:07:10

Sure lougle, I'm over it anyway.

I have absolutely no problem with parents 'diagnosing' their children, they can't make much more of a hash of it than a lot of professionals and it will carry about as much weight anyway smile

The strategies are hardly controversial so if they help, great, if not, no loss.

Maryz Wed 06-Mar-13 23:08:01

I think "collection of behaviours" is a very good description for a lot of these "diagnoses" - and I've found that dealing with symptoms works very well a lot of the time.

Of course, now I'm dealing with ds2 who has a whole different and diverse set of behaviours and I've discovered that a lot of what worked with ds1 doesn't work at all for ds2 and I'm having to relearn all over again.

What we all need, actually, is an individual diagnosis and book on "how to cope with" for each child. I could write a fantastic book on "Maryz'sds1 Syndrome". But it wouldn't even help me with ds2 confused.

In fact, mainly what I have learned is not what to do but what not to do - so parenting has become a series of efforts to not make things worse - and exhausting is the right description of it.

That's a lovely post marchduck smile

HotheadPaisan Wed 06-Mar-13 23:09:03

And I'm crossposting all over the place and have a very bad habit of not using names in replies, sorry about that.

Maryz Wed 06-Mar-13 23:09:40

Sorry, x-posted again. The fecking site is so slow it logged me out twice hmm.

He sounds like hard work at the moment Hothead.

Maryz Wed 06-Mar-13 23:10:26

[arf] at cross-posting.

I like these threads, it's a bit like doing a jigsaw putting together who is talking to who about what grin

HotheadPaisan Wed 06-Mar-13 23:11:16

Absolutely I think you could perm 6 from 12 for example. In fact I just did another survey thing for the OT on DS1's sensory issues, I looked at the scores underneath afterwards and you can clearly see problems in 3/4 sensory areas but no significant problems in others.

Maryz Wed 06-Mar-13 23:16:18

I just did a Connors Test for ds2 to test for ADHD.

He came up absolutely 100% ADHD in every area of attention and hyperactivity, but negative on the oppositional bits.

I know for sure that if I had done one at the time for ds1, he would have fitted the criteria in all three areas. But at the time they didn't test for ADHD, because children with ADHD got no help in school. The only available help in school in Ireland was for autism - because of a court case the previous year. So they tested for (and found) Asperger's.

They could have tested for (and found) a lot of other things, but Asperger's was a useful label, in some ways.

But it is important to deal with the individual not the Syndrome - as I have tried unsuccessfully to teach his teachers over the years hmm

HotheadPaisan Wed 06-Mar-13 23:18:21

I feel for him, he's always battled himself but now he's battling others which is a major problem. To me though he's just my lovely little boy and he needs help. I cannot get across how utterly relentless it all is, how impossible it is to get help until you are totally desperate and practically begging, and discussing possible residential with your partner like it's a viable option for a 6 year old - alright not viable, but it's all you can think of to get a break.

And this despite good stabs at ABA principles (school have naturally gravitated towards task/reward and it had been working) and having two resourceful and committed parents and a lot of 1-2-1 at school. It's all fallen apart lately, not really sure why, maybe a developmental stage or something, am hoping the psych will have some answers.

Maryz Wed 06-Mar-13 23:25:28

That's really tough.

I remember when ds1 was about 8 and he was just so unhappy it was unbearable to watch. He talked about killing himself and other people, and was in constant trouble at school - everything he did was wrong.

Him getting a diagnosis really helped as his teachers backed off a bit, and he got a lot less punishment. He did quite well then until secondary when the shit hit the fan again, but he always had ups and downs, often (with hindsight) linked to growth spurts, almost as if when he body was growing, his brain switched off a bit.

With hindsight, the one thing I would change is that I would stop caring about getting him to fit in, I would have given in to a lot more things that made him happy (not used football cards as rewards, but just bought them for him, that type of thing), and I would have taken him out of school earlier. But I'm not sure that anything I could have done would have made him happy - he had to find out things for himself.

How is your son at home? Is he happier than at school?

WilsonFrickett Wed 06-Mar-13 23:36:25

As a group of course we are overly dx focused because without a dx we know that nothing will happen in terms of support. Actually when you're getting down to talking about PDA vs ASD vs ADHD vs SCD it isn't that important IMO. It's just about having enough of a label to qualify for support sad

HotheadPaisan Wed 06-Mar-13 23:37:03

That is exactly what DP and I have just agreed to do, get him the DVDs, get him the activities, anything at all he's interested in, there is so little he's interested in, I just want to broaden his interests. And he just simply cannot meet demands sometimes and it's wrong to keep trying to force him. You still chip away though obv.

We're finding lately that if school is bad, home is ok and vice versa, it's all peaks and troughs in general though.

I have really wondered if this is a growth spurt (he'll be seven in a couple of months), he's been off the wall lately, quite different to 'avoidant but flight' behaviour in the past, very much stand and fight now which has taken everyone by surprise.

Yeah, I wonder if we push him too much, not that we're super pushy, just you know, trying to go out and do normal, family stuff, this has just been too hard for him lately at the weekends when destressing from school.

HotheadPaisan Wed 06-Mar-13 23:38:21

Did you remove him from school Maryz? That might be an option when DS2 is at school, don't know, so wary of losing any support at all.

Maryz Wed 06-Mar-13 23:40:59

I'll come back to this tomorrow, dh is yelling at me now.

But I empathise with the good at school/bad at home and vice versa - ds was very like that. Almost as though he could "fit in" for a short period of time but then his brain would melt (as he describes it now) and he would just panic and hit out.

He learned early that fury was an easy emotion - you didn't have to think, and people would do what you wanted hmm.

Boys get testosterone boosts at about 7 (according to Steve Biddulph) and apparently that is why some behavioural problems come to light at about that age, and then again at 13/14 (puberty). Just a thought.

That balance is so hard - between pushing him out of his comfort zone to stretch it, and letting him stay in it (but being scared it will contract too much), iyswim.

HotheadPaisan Wed 06-Mar-13 23:41:31

Agree Wilson, but I wouldn't tell someone else that their description or name for the collection of behaviours they see is vile and that I don't believe in it, that's just unnecessary.

Maryz Wed 06-Mar-13 23:41:58

He removed himself - he deliberately got caught smoking dope, owned up and got kicked out.

With hindsight we should have taken him out - I knew he was going to do it. He just couldn't cope any more. He was just 15 then.

Night - talk tomorrow.

HotheadPaisan Wed 06-Mar-13 23:44:54

Sure thing, thanks for the chat, agree, just mean we need to back off right now as we're in crisis, then we can build his tolerance for demands back up again and reintroduce rewards etc. He saves us a fortune in after school clubs and other activities, packets of Top Trumps and DVDs are the least of our problems right now.

Sorry to hear about your DS, so hard isn't it.

bialystockandbloom Wed 06-Mar-13 23:45:18

Hothead I didn't really want to get involved in the discussions earlier, but just wanted to say sorry things are so hard atm sad

I agree, fwiw, that what is important is not the 'label' but the difficulties, and I agree that the umbrella term 'ASD' will most likely be broken down in years to come. It's useful if having the right diagnosis can lead to specific strategies that are relevant to your child's specific difficulties. But in reality, as of course you know, even if you had an iron-cast diagnosis, the strategies that might work for some might not work for your child anyway, each child being different and all that.

Anyway, I'm waffling, it's late, but just mainly wanted to offer a shoulder if you need it smile

PolterGoose Wed 06-Mar-13 23:50:32

me too hothead, I know we've chatted before, my ds's dx is AS and SPD but your posts about your ds describe very familiar stuff, I'm around too much if you want to start a thread maybe?

HotheadPaisan Wed 06-Mar-13 23:50:39

Thank you smile

I feel strangely calm about it all, it can't really get much worse, exclusion will be next, has been said already so at least we've been warned.

What Maryz just said has really struck a chord, I said to DP earlier that DS1 is being more violent and aggressive because he realises the power of it in terms of control. Also, I think he finds the 'rush' he gets from the reactions, even if they frighten him (restraint etc, not us, school), comforting in some way. Need to talk to the psych about it, I don't know enough.

HotheadPaisan Wed 06-Mar-13 23:54:45

Thanks Polter, I hate this stuff living forever, am really glad I got annoyed earlier though because it's made me talk about this, and it's really helped.

I have a plan, things will get better, or we'll make changes. Everyone forgets that in the middle of this maelstrom, with adults unsure what to do and struggling to cope, that there's a small boy who definitely doesn't know why he's doing what he does and can't control it.

WilsonFrickett Wed 06-Mar-13 23:59:09

Agree Wilson, but I wouldn't tell someone else that their description or name for the collection of behaviours they see is vile and that I don't believe in it, that's just unnecessary.

No, indeed.

And also your post at 23:50 struck a chord. I am quite a shouty person and I recognise the 'rush' you describe. I can understand how that could become quite addictive too. Almost like an endorphin rush? Does that make sense? It's what I imagine people who purge feel like afterwards.

HotheadPaisan Thu 07-Mar-13 00:02:18

Do you know, haven't got the first clue about physiological stuff, or even if that's the right name, but I said to DP earlier it's like it gives him an endorphin rush, like you get after a run. So we decided I'd take him running at the weekend smile At the rec, where hopefully there will not be any dogs.

Also, that not having to think is interesting, it blocks people and thoughts out doesn't it when you shout.

PolterGoose Thu 07-Mar-13 00:04:32

I guess though if a child is at peak anxiety all the time they will soon work out that the only way they can get rid of it is to explode and slump, now whether that is a conscious act or an auto response I don't know confused

HotheadPaisan Thu 07-Mar-13 00:10:00

Some kind of (lack of) coping mechanism isn't it. I wish I had a psychology/ child development background.

EllenJaneisstillnotmyname Thu 07-Mar-13 00:11:22

Hothead, if you want to offload less publicly, you can always start a thread here and link to OTBT, like you did before? I would hate for you and your DP to be struggling with this alone when there are lots on MN who would be happy to hand hold at the very least. smile

frizzcat Thu 07-Mar-13 00:13:51

Hothead - really feel for you, don't have any practical stuff for you, just a wee nudge to keep going, your ds is lucky he's got you

WilsonFrickett Thu 07-Mar-13 00:15:53

Well thats interesting Polter because for me it's because thats how my mum parented. So in a sense it's my auto response - but because obviously I've been working on my parenting for ages in regard to DS - i only go there now when I'm at the end of my tether. And it feels very comfortable, liberating. Like I'm in the place I'm meant to be in. (OBVIOUSLY while all the time my conscious self is going wtf, shut up!)

Does that even make sense? wine has been had. I self-observe that being out of control feels like being utterly in control, and I put that down to my parenting role model.

::more articulate::

HotheadPaisan Thu 07-Mar-13 00:25:16

Thanks all, I felt the fear and did it anyway and it's out there now.

It absolutely clears my mind to be angry, and then it's over. At least DS1 and I don't sulk.

<Small mercies>

PolterGoose Thu 07-Mar-13 00:29:59

Wilson I know exactly what you mean

PolterGoose Thu 07-Mar-13 00:31:07

Hothead as I keep telling ds "Angry is fine, angry can be good, just don't punch people"

hazeyjane Thu 07-Mar-13 06:53:10

I caught a bit of this thread when it started going a bit pear shaped around PDA, then ds woke up screaming, but I was shock at plenty's posts, and just wanted to say that's the kind of thing I read on the main board and thank god I don't see it on mnsn, but obviously I am wrong about that. Hothead, we had a thread going on OTBT once, maybe it would be good to start an offloading thread there.

I feel a bit sad about the honking thing, I have seen lots of newer posters ask (as I did once), what it's all about, and then join in, but I'd hate it to make the place seem like some sort of exclusive club.

Tbh, I don't think honking is any different to 'naice' or 'ODFOD', iyswim, iirc or any other evolving Internet forum in-words.

They make no sense until you ask or see it explained. That's just the way it is.

EllenJaneisstillnotmyname Thu 07-Mar-13 07:10:15

Yes, I guess. We'll just have to explain it a bit more often.

EllenJaneisstillnotmyname Thu 07-Mar-13 07:10:44

And I like ODFOD!

HotheadPaisan Thu 07-Mar-13 07:32:40

I don't think people should stop honking, I'm happy for others to do it for others, I'm just a bit too intense for it smile

And thanks for the support, I did think 'fuck this, I CBA to justify myself on here' and then I thought others come in for flack about their areas so no reason for this not to.

I will be absolutely gutted if support/information threads go down a 'PDA, what a load of nonsense' road though. But that's not to say other possibilities or options shouldn't be voiced.

Maryz Thu 07-Mar-13 08:35:49

Hothead, do you have a thread somewhere - I don't want to completely derail this one.

In my experience, admitting the problem and being open about it helps in the long run. You can't live your life being terrified about the future, you just can't cope with it, you fall apart - I know because I did.

Tony Attwood opened my eyes to why children with ASD get so angry. I went to a seminar of his where there was a whole session devoted to the concept; I'll try to find a corresponding article.

And can I suggest that if the school are going to suspend him that you don't tell him he is suspended. I know that sounds mad, but at the age of 6 he is going to look at it very differently from an NT child - he will see "behave badly = days off school, what a relief". I used to keep in touch with the school and take ds out voluntarily to give everyone (him and the teachers) a break. If they want to mark it up as a suspension to harden the case for extra help, fine, but telling him he is being "punished" by being allowed to stay at home won't help.

By the way, I'm more of a practical "try this" poster than a "have a hug" poster, so tell me to fuck off if you want grin. I don't mind.

I love ODFOD.

Have you seen this thread

TheNebulousBoojum Thu 07-Mar-13 08:46:46

HotHead, I'll be back later, but your DS sounds exactly like mine at that age.

HotheadPaisan Thu 07-Mar-13 09:21:26

Tell me there's a happy ending Neb smile

Might do an OTBT later or maybe even start a 'Current PDA struggles' so people can hide the thread if they want.

HecateWhoopass Thu 07-Mar-13 09:45:20

I don't have anything valuable to contribute to this discussion. I just wanted to say that I think this section is home to some of the most intelligent, articulate, caring and compassionate people I have ever known in my life, people who no matter what they are going through, are still there for others. I know that there are arguments and that's really sad for everyone involved, but I just really wanted to say that you're all lovely people and nobody is motivated, as far as i can see, by anything other than a genuine desire to reach out to others. To help, to be helped, both.

That's waffly. Point is, I think you're all ace.

SallyBear Thu 07-Mar-13 10:08:13

Hecate that's a bit luffly! smile

silver in response to "Is there anything we (as a community) can do to welcome people who feel left out? Anything we can do to help posters who lurk rather than post?

I think you just need to re read the thread to see where it's going downhill for some and why the lurkers may not want to post. I also ask to take a fair look at the messages deleted and how some feel they don't fit due to being bullied or 'face not fitting'.

Some of it also shows how unsupportive the board can be and why some may question why someone says something or the actions of others.

Hope this makes sense x

Maryz Thu 07-Mar-13 10:48:54

devient, I think it is very sad that you can read such a supportive thread and only see the negatives sad.

Hecate's post may be fluffy, but she has hit the nail on the head when she says that "nobody is motivated, as far as i can see, by anything other than a genuine desire to reach out to others. To help, to be helped, both."

I think it is a pity that you don't seem to be able to see that.

I can't see anything on this thread that "shows how unsupportive people can be" - yours are the only negative posts.

I understand that some people feel they don't fit, but I don't understand why.

And I also don't see bullying. I see people saying they feel bullied, but again don't understand why.

I really, really don't get it. And believe me, I've tried.

Hothead, if you start a thread let me know smile.

sickofsocalledexperts Thu 07-Mar-13 10:51:57

I don't think it's bullying but I do think people can tend to be far more brusque on the keyboard than they would to someone's face. It's the same on Twitter and Facebook. A couple of extra words can make all the difference in he tone of a post - not fluffiness, just politeness

I too think it's sad I should feel this way about something that should be supportive. My posts are not the only negative posts around and I think it's easy to see why I feel slightly bullied.

WilsonFrickett Thu 07-Mar-13 11:00:48

Deviant, it's not easy to see why you feel bullied. I don't see it - although I didn't read the deleted posts. Can you articulate why you feel bullied?

Maryz Thu 07-Mar-13 11:01:58

But devient, I've seen about twenty posts from you in the last few days saying you feel bullied. What exactly are people saying that is bullying? Apart from suggesting that you look at the board a bit more positively, and try to see the good bits as well as the bad.

I really have tried to see it from your point of view, but I can't understand why you feel so strongly that everyone is out to get you [baffled]

Maryz Thu 07-Mar-13 11:03:01

Wilson, most of the deleted posts (iirc) were asking the same question, but were also saying that some of what devient was writing was very passive-aggressively "poor me".

<awaits deletion>

It's the same people, doesn't matter what I say or how they think I say it or sometimes even what it's about, it's misinterpreted, used against me then they all join in backing each other, exactly what happened on this thread. Then they all praise each other for doing so. And now I feel Iv'e said too much and the same will happen again, however it is my opinion, we are all entitled to it.

My first post on this thread was met with hello until it all got turned around after each post wasn't read. Then went quickly downhill.

Maryz Thu 07-Mar-13 11:07:58

Oh, for heaven's sake.

Your very first post on this thread talked about bickering and people twisting your words. You started the accusations, on this thread.

Why?

Why not just chat to people?

there was also the part where you failed to see the Riven post, then what I said was turned to the past is the past leave it there so to speak when that isn't what I was saying, then that caused a few to turn against me.

oh dear I wish I had never tried

Maryz Thu 07-Mar-13 11:09:25

I said this earlier, but I think it's worth repeating:

"devient, just chat. Don't make it an agenda, or apologise or back off or out. It makes it hard to chat back to you. Just talk as if you were on a phone to a friend. Don't try to look for cliques or gangs or people twisting words, don't look back on the thread, just carry one talking.

At least that's what I do, I just carry on regardless."

Maryz Thu 07-Mar-13 11:10:04

And I said I was sorry for misunderstanding your post. I misread it - I didn't twist it, really I didn't.

apologies to those who have said the same or inboxed etc, I am not the right person to air this, hopefully someone else can.

yes Maryz your quoted response was to my retaliation against a post that was very aggressive to me

anyway I shouldn't be on here, the home tutor is here

Maryz Thu 07-Mar-13 11:13:40

But it's still true, though.

People are rude to me all the time. I just carry on, I don't take it personally.

I have no beef with anyone on here, but I hate being called a bully, or a gang, or a clique, because I'm not.

And I don't think people pm-ing off thread, either support or insults, and then saying that people are pm-ing helps either. It's a bit like saying "my gang are on my side against your gang" when I don't see a gang (on either side) at all.

I'm trying here - help me out. Try to look at the whole section, the whole of SN positively and see what happens.

silverfrog Thu 07-Mar-13 11:14:11

there are deleted posts on this thread? shock

I didn't think it had anythign worthy of deletion on it - most of it has been very measured indeed.

devient, I am sorry, but I don't understand why you feel bullied.

I have seen you say it often, and also that the SN board os not a welcoming place, that it's not for everyone, etc.

there have been disagreements here - I have been part of some of them, others I have steered clear of. Some I have just simply missed.

Plenty of peope have voiced opinions that the interventions I use with dd1 are cruel, or pointless, a waste of time and money. occasionally it gets to me - more in a red rag to a bull way than a woe is me way, but I do sometimes bite back.

but ultimately, I don't care what others think - I have to deal with my dd, in a way that works for us a s afamily. other people don't have ot deal with my life.

I don't like the repeated assertions, especially out on the main board, where there might be posters who could be thinking of dipping a toe into the SN board, that we are all bullies, that we gang up on people, don't accept them, and hound them off the boards. that faces don't fit. as I said above, a lot of what I do/don't do doesn't 'fit' with many posters on this board.

I don't vaccinate. I use special (unproved, scientifically speaking) diets. I use 'woo' interventions like sensory ot and cranial osteopathy. I have investigated behavioural optometry, and retained reflexes. I use 'dog training methods' with dd1 (and dd2, for that matter) - there are loads of people here who would think I am bonkers for any one of those, let alone a whole string of them. I have been called names many a time for a couple of them (not really here - out on the main boards, although w do sometimes get threads which edge towards judging on issues like vaccination over here too).

but I don't feel bullied.

I have been questioned as a parent because of what I do - told I shouldn't have childrne ,that posters would be pleased ot see my children get ill. sometimes I can't handle that, and I withdraw from those topics for a while - I haven't really been in the vaccination topic for a bit, as I have a baby ds, and he is unvaccinated, and obviously as he is so young he is quite vulnerable. I don't need ot be told repeatedly that he wil DIE if I don't vaccinate him.so I don't read the threads, and I don't engage with them - because it would not be a good place for me to be right now.

but I don't wander around the rest of MN telling evetyone that posters on those threads are bullies, or unaccepting (although they are far more unaccepting of alternatives viewpoints than MNSN ever is or has been) - I engage with them on those threads, or I ignore.

Maryz Thu 07-Mar-13 11:17:55

Someone has gone through and reported loads, I think.

I hate it when lurkers report. I wish people would post on the thread because it makes it seem so much worse when there are huge gaps, especially when I don't think many were delete-worthy at all.

And I avoid the vaccinations threads like the plague - they are really scary. Worse than Feminism grin

<that was a joke, by the way, before I get eaten by either feminists or vaccine-people from either side>

silverfrog Thu 07-Mar-13 11:21:21

I am quite sad there are deletions, tbh. this thread was for talking it all through, and I though for the most part that was what it had done.

there have been some disagreements - see the PDA stuff from last night - but they were openly discussed. maybe agreement will never be reached, but views on both sides are known.

silverfrog Thu 07-Mar-13 11:22:07

oh, and totally agree re: vaccinations and feminsim.

I avoid feminism, but vaccinations is (sometimes) like and itch I just have to scratch.

<will never learn emoticon>

PolterGoose Thu 07-Mar-13 11:26:14

I've had my first deletion shock

Am I a proper MNer now?

bochead Thu 07-Mar-13 11:27:11

If you want nasty on any parenting forum go look at a breast v bottle thread - they are really only for those made of stern stuff wink

I can only remember twice being outright horrid to anyone on this forum. The first was when I felt that another poster was saying that if people didn't adopt her own approach then they were dooming their children, the second was when I felt a fathers for justice bod was trying to appropriate the forum for his own very personal political campaign.

Otherwise I'm only guilty of ever being sleep deprived and as a result a bit tactless!

sickofsocalledexperts Thu 07-Mar-13 11:27:39

It is funny about the feminist site. I too find it scary yet I m a total feminist (in fact probably a little too far the other side) and have operated at very senior levels in very pressurised and high-powered male-dominated environments. Yet somehow those threads make me feel like I've missed a vital memo, or haven't read the correct left-wing feminist tracts. Most odd

Maryz Thu 07-Mar-13 11:30:12

No, Polter, you need an email from Olivia telling you to calm down. And a whole thread deleted. And to spit out your dummy and threaten to flounce?

Not that I've done any of those things, not me <lies>

PolterGoose Thu 07-Mar-13 11:34:09

Maryz grin

lougle Thu 07-Mar-13 11:38:06

I've just come back to this and I'm absolutely baffled as to why my post has been deleted. I don't see that calling a passive-aggressive post a passive-aggressive post is breaking the talk guidelines.

I have kept my cool, I have not retaliated to threads directed at me, with my name in the title.

This situation is completely destructive. Posters who claim they 'cannot post' having other posters speak on their behalf. Really? hmm

I'm not getting the impression at all that there are discussions being had elsewhere about the SN board. No, not at all hmm hmm

Lol Maryz, that was what I was gonna suggest, right got to go and finish decorating my easter chick

WilsonFrickett Thu 07-Mar-13 11:54:54

Hey now, I'm a feminist vaccinator and I play nice wink

devient, I just don't see this 'ganging up' that you speak about.

Which leads me to another point - I actually do have a knee-jerk reaction to this idea of SN parents all being a homogenous (sp?) mass. We don't always think the same way. There will often be challenges to peoples' approaches. I think that's a good thing though. Because we're not a 'gang', we're a collection of individuals.

Admittedly 'but I can't because' threads get wearing, but I always try to put myself in the OP's shoes and think, well, they probably can't see the wood from the trees, or see that they can change anything, right now, today - but maybe they will tomorrow.

HotheadPaisan Thu 07-Mar-13 12:16:50

There will always be problems with a one to many, many to one and many to many conversations, it's the nature of it.

This thread just isn't juicy or interesting enough for PMs imo.

It was started as a pretty bland welcoming, have a brew kind of way.

A couple of posters said they felt isoltated because they didn't drink tea.

Some of the brew offerers said, 'sorry, what would you prefer?'

Posters responded with 'stop ganging up on me. It's obvious!'.

confused

silverfrog Thu 07-Mar-13 12:53:21

shock

Miss, miss, Starlight said my thread is boring!

<I'm one of those non-tea drinkers, btw. gin or wine only on this thread!>

ouryve Thu 07-Mar-13 12:59:44

YY to hotheadpaisan's comment about PDA strategies. We were using them with DS1 long before I'd ever heard of it. By the time he was 6, the standard textbook ASD approaches just plain enraged him or, at best, increased his anxiety levels to boiling point.

HelenMumsnet (MNHQ) Thu 07-Mar-13 13:04:37

lougle

I've just come back to this and I'm absolutely baffled as to why my post has been deleted. I don't see that calling a passive-aggressive post a passive-aggressive post is breaking the talk guidelines.

I have kept my cool, I have not retaliated to threads directed at me, with my name in the title.

This situation is completely destructive. Posters who claim they 'cannot post' having other posters speak on their behalf. Really? hmm

I'm not getting the impression at all that there are discussions being had elsewhere about the SN board. No, not at all hmm hmm

Afternoon.

We've deleted a few posts here because they were reported to us as personal attacks - and we thought they were.

We have also had other posts from this thread reported to us as personal attacks, which we haven't deleted because we didn't read them that way at all.

As we see it, and in line with our Guidelines, it's completely fine to express a criticism of MNSN, either in general or more specifically about the kinds of posts that tend to be posted, but it's not fine to attack another poster personally.

So, "I think the way MNHQ come onto threads and post is very annoying and intrusive and I wish they didn't do it" is fine - if not very nice.

But, "I think HelenMumsnet is very annoying and she's always getting on people's nerves by jumping into threads without warning" would be a personal attack and a breaking of the Guidelines.

On a more general note, it's lovely to read so many testimonies her about how MNSN has been such a help/lifeline to so many. Hurrah!

We can also see that, at times, some have not found it helpful.

We think, as many of you have pointed out, this is what can happen on a board that's been running for a while.

A poster at the very beginning of her SN journey may come across others who are a long way further down the road. Most of time, the discussion is wonderfully warm and supportive and helpful. On the odd occasion, the (understandable) fragility/maybe even partial denial of the new-journeyer can rub up against the been-there-and-done-it practicality of the older-timer - and feelings can be (usually completely unintentionally) hurt.

This is kinda the nature of discussion forums - there will always be posts you may not agree with - but, in our experience, it is mercifully rare in MNSN. And that's all down to you folks being such lovely people to talk to, even when you're all at your absolute tether end.

That said, there will, inevitably and very sadly, always be one or two posters who don't/can't find what they're looking for here in the way of advice, understanding and support.

That's not their fault or the fault of other folks who post here; it's probably down to the unique difficulties of their own circumstances - which could make it hard for others to relate to and help with.

Of course, that's a terrible shame. We'd like to think everyone could find support and answers here. But we don't think there's anything to be gained by getting cross with others for not being able to help or, indeed, getting cross with those who are getting cross, iyswim.

ouryve Thu 07-Mar-13 13:22:48

Tea?

Strong, white, no sugar please.

Taverymuch.

lougle Thu 07-Mar-13 13:42:14

Thank you for your response, HelenMumsnet.

I do think it's unfair to have specific posters complaining about 'you lot' and then not being able to respond to that specific poster by pointing out that their post is (passively) aggressive.

If you feel that it breaks talk guidelines to suggest that someone is perhaps being unfair to posters who are not paid, who are themselves up against it with the world they are coping with...so be it.

HelenMumsnet (MNHQ) Thu 07-Mar-13 13:46:52

lougle

Thank you for your response, HelenMumsnet.

I do think it's unfair to have specific posters complaining about 'you lot' and then not being able to respond to that specific poster by pointing out that their post is (passively) aggressive.

If you feel that it breaks talk guidelines to suggest that someone is perhaps being unfair to posters who are not paid, who are themselves up against it with the world they are coping with...so be it.

If someone was complaining about "you lot" as a specific group, that would be a personal attack, too. If we've missed one of those, do please report it.

lougle Thu 07-Mar-13 13:55:14

Thanks Helen. I received your email after posting. Apologies. I've sent return mail.

AnniDoesHaveDreams Thu 07-Mar-13 14:10:12

This website was a life saver for me when my DS was diagnosed. Whilst guilty of being a lurker I have occasionally ventured the occasional support thread. This was mainly because I didn't want to sound too knowledgeable about anybody else's DC's condition even if similar to my own DC.

You were all here when there was no-one else to turn you made me realise that I wasn't the only person in the world trying to deal with a situation completely outside my experience. There was no local support everything I needed to know was pretty much on here and I can't tell you how grounding that was.

Never think that what has been done on here over the last few years has not been of great value to at least one person (that would be me!) or empowered many others.

I thank you. thanks

HecateWhoopass Thu 07-Mar-13 14:39:33

sorry for being overcome with the fluffy, maryz. blush grin I am back to myself now.

EllenJaneisstillnotmyname Thu 07-Mar-13 14:48:20

Skimmed back through the whole thread to see if I'd had a thread deleted and I haven't. sad <disappointed> <still too fluffy>

EllenJaneisstillnotmyname Thu 07-Mar-13 14:48:37

A post, not a thread, duh.

bialystockandbloom Thu 07-Mar-13 15:00:21

Ellen if you like you can tell me to fuck off and I'll report you. Would that work? grin

Hecate I thought your post was lovely.

EllenJaneisstillnotmyname Thu 07-Mar-13 15:02:22

Fuck off bialy, like that would work! angry

bialystockandbloom Thu 07-Mar-13 15:07:46

[Post deleted by MNHQ]

bialystockandbloom Thu 07-Mar-13 15:08:04

grin

lougle Thu 07-Mar-13 15:09:01

Even you can't do the blue, Bialystock grin

EllenJaneisstillnotmyname Thu 07-Mar-13 16:04:09

[Post deleted by MNHQ for not being grey enough]

bialystockandbloom Thu 07-Mar-13 16:25:30

ODFOD
wink

Galena Thu 07-Mar-13 16:34:43

Now I'm going to flounce because you're all being cliquey! I don't understand ODFOD!

(Only joking about the flouncing... Honest! grin )

bialystockandbloom Thu 07-Mar-13 17:12:36

Stands for Oh Do Fuck Off Dear (maryz linked to other thread explaining it all earlier on).

Now I don't understand the blue/grey thing confused

Maryz Thu 07-Mar-13 17:14:07

<breezes back in>

<yells fuck off at everyone>

< flounces goes back to read thread>

PolterGoose Thu 07-Mar-13 17:16:11

bialy it's cos MNHQ's posts are blue and grey (or they are how I view it, don't know if its the same for everyone)

bialystockandbloom Thu 07-Mar-13 17:17:19

Silverfrog when you started this thread, is this how you hoped it would turn out, everyone just telling each other to fuck off grin

HelenMumsnet (MNHQ) Thu 07-Mar-13 17:17:34

bialystockandbloom

ODFOD
wink

<narrows eyes>

TheNebulousBoojum Thu 07-Mar-13 17:19:20

'SOK Helen, we can tell a fake when we see one. Even if she manages to turn the air blue, her posts won't change.

Maryz Thu 07-Mar-13 17:24:54

<finishes reading thread>

<opens wine>

Helen, I do get your point, but it is hard sometimes to have a sensible discussion when half the posts have been removed. Especially when the vast majority of them were just trying to hash out a problem, rather than being specifically attacks.

How do you respond to a poster consistently saying "everyone hates me"? It becomes very difficult.

Maryz Thu 07-Mar-13 17:26:23

Sorry I meant to add - so I wouldn't want posts referring to "you lot" deleted because then the whole thread wouldn't make sense.

Does "the SN board isn't welcoming and there is a lot of bullying over there" count as an attack? If it does, I will report it every time I see it - or you could probably find lots of posts like that yourself hmm if you had a spare couple of days or so

TheNebulousBoojum Thu 07-Mar-13 17:31:14

Not personal though, it's being grumpy about everyone everywhere because we are all mean. The scattergun approach.
If a poster finds the SN boards unsupportive here, then they need to look elsewhere. Because everyone should be able to find a niche they feel comfortable in, but if you've tried to snuggle in numerous times and it still doesn't fit then it's just the wrong niche for you.

bialystockandbloom Thu 07-Mar-13 17:33:55

Ah thanks polter <dim>

bialystockandbloom Thu 07-Mar-13 17:43:55

Ha I made blue!

Galena Thu 07-Mar-13 17:45:42

Thanks. Now I shall narrow my eyes menacingly at anyone who ODFODs me...

silverfrog Thu 07-Mar-13 17:48:29

bialy - hoped is the wrong word, but I did think the swearing might creep in quite a lo earlier than it did, tbh grin

SallyBear Thu 07-Mar-13 17:49:47

(Whispers) I had to look up the meaning of ODFOD.....

zen1 Thu 07-Mar-13 17:50:18

I haven't read the whole thread, but just wanted to say that MNSN has helped me more than anything / anyone I've come across in RL. I have lurked and occasionally posted for advice since someone gently nudged me over from behaviour/development 3 years ago.

Without this forum, I'm pretty sure my DS3 wouldn't be getting DLA (never heard of it before I tuned in here!), neither would he currently be undergoing SA. I've found the knowledge and information imparted has spurned me on to making sure I cover all bases insofar as trying access the services and provision I feel DS requires; seeing how proactive people are on here has made me a more proactive person.

I don't often feel in a position to offer advice myself as DS is relatively newly diagnosed and I spend an awful lot of time information gathering, but hopefully once I have got to grips with things, I will feel more secure in helping others.

hazeyjane Thu 07-Mar-13 17:50:48

I find it bizzare to have been deleted, I always try and be so bloody diplomatic, I don't think I'll bother in future!

Joins in with telling everyone to Fuck Off!!!!

Wankers!!!

hazeyjane Thu 07-Mar-13 17:52:55

goodness what an appalling bit of crossposting, it now looks as though i have just told you to fuck off, Zen1, which i really wasn't blush

In my defence, I am giddy with a combination of co-codamol, too much rocky road and the liberating feeling of having been deleted for being 'a bit cross' on mumsnet.

TheNebulousBoojum Thu 07-Mar-13 17:54:32

<smug>
I didn't get deleted. I'm a good girl.
<waiting for special sticker from MNHQ>

Galena Thu 07-Mar-13 17:54:51

Oi! You calling me a wanker?! I take that personally as a personally personal personal attack!

ODFOD!

(And hazey, you are one of the the least attacky people I can think of!)

bialystockandbloom Thu 07-Mar-13 17:56:47

Lol hazey grin

Zen1 I fully agree with you, and without MNSN I (and ds) would be in a very different and much worse place.

hazeyjane Thu 07-Mar-13 17:57:08

I am think of scrawling ODFOD on my arm with biro, and wearing my hair in a side ponytail.

<chews gum, spits, throws litter>

ok i am running out of rebelliousness.

zen1 Thu 07-Mar-13 17:57:38

No offence taken, Hazey grin

Maryz Thu 07-Mar-13 17:57:55

I didn't get deleted either yet which is pretty amazing really.

I find when I try to be diplomatic I usually fail spectacularly.

Tootsandblanket Thu 07-Mar-13 17:59:57

I still don't know what ODFOD means.. Oh dear.
This has turned into a bit of a bun fight hasn't it? I've been trying to keep up reading whilst attending to my highly demanding teething DD.
I kinda want to tell everyone to fuck off too- it feels so liberating - even though I haven't been involved in earlier posts. I feel so much better already!

This place has helped me since DD has come home from hospital- it makes me feel less isolated, gives me information, perspective and comradeship.
I say thanks and wine to everyone!

bialystockandbloom Thu 07-Mar-13 18:00:28

Shall we make up some random and meaningless acronyms, and post willy nilly around MN? Especially on those "my dh is an twat he must have ASD" or "here comes the SN brigade" threads.

Maryz Thu 07-Mar-13 18:01:08

Oh, do fuck off dearie grin

I linked somewhere ^^ up there to a fuck off thread which had some lovely acronyms on it.

Tootsandblanket Thu 07-Mar-13 18:02:35

Haha I love it ! Thanks Maryz . A nice combination of rude yet patronising.

lougle Thu 07-Mar-13 18:03:37

My issue with being deleted is that it is very hard to respond to somebody criticising you and libeling you without actually responding.

However, it seems that responding is a deletable offence.

I particularly think it's not on to have to read that others who will not post themselves 'also feel' this.

Maryz Thu 07-Mar-13 18:03:46

One of the suggestions on the other thread was oh do run along now dearie.

Or drand. Which is suitably passive-aggressively superior. And isn't even swearing.

Maryz Thu 07-Mar-13 18:05:14

Yes, lougle. And also if you are deleted someone can say you were being insulting, whereas in fact you were just correcting what that poster said. And then sometimes his/her post has gone as well, which just makes the whole thing a mess.

There wasn't (in my opinion) a single post on this thread that was deliberately insulting to any one poster. A couple of years ago, none of the threads would have been deleted.

Maryz Thu 07-Mar-13 18:05:32

Argh, I mean not one of the posts would have been deleted.

silverfrog Thu 07-Mar-13 18:12:00

yes, agree that in the past nothing that was on this thread would have been worthy of deletion.

it's all got a bit over-sensitive, tbh. you are right, lougle - how can you respond to someone addressing you personally, about a particular point, without, erm, mentioning that point in your reply.

and the fact that the comments that are made elsewhere are ok because they are generalised is just crappy too. they are not particularly general - they are made, about a specific group of posters.

and indeed hmm to the obvious discussion elsewhere. if people feel the need to have a say on this thread and what is being discussed within it, they could at least have the courtesy to come here and say it, rather than having others post it on their behalf.

coff33pot Thu 07-Mar-13 18:12:51

PGPWTCOTM1

Please go play with the cars on the M1?

Would that be ok? started of with please or too fluffy lol? grin

lougle Thu 07-Mar-13 18:13:21

It's totally unfair. Threads were started and deleted. I had no right of reply on them.

Then we are told that 'others' feel 'similarly'. We have no right of reply, because anything we say is deleted.

Other posts which portray this topic as unsupportive and alludes to posters being unwelcome are left, presumably because they are 'opinion.'

It's just marvellous.

bialystockandbloom Thu 07-Mar-13 18:13:59

I didn't read those comments before they were deleted, and was pretty surprised to see there were even any, esp from posters like you lougle as I don't think I've ever seen you being offensive. Makes more sense now.

I do wonder whether MNHQ are being this over zealous vigilant in response to the cries over the last year or so about seemingly turning a blind eye to disablist comments. (Not that the comments were disablists of course, just mean being more vigilant in general.)

lougle Thu 07-Mar-13 18:14:38

coff33pot, I think that may be veering into Motorwayist territory. Why not the M4 and what has the M25 done to you?

Maryz Thu 07-Mar-13 18:15:29

And have the courtesy to say they are reporting loads of posts. It seems from Helen's post that half the thread was reported, but only some posts were deleted